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Monday, January 11, 2021

Personal and Family Caregiving Issues


Caregivers often have complicated roles that can include love, hatred, guilt, joy and resignation. People become caregivers for different reasons, and the reasons are not always their own preferences. During my years as a hospice volunteer, I have spoken to many caregivers. They shared their stories. These are three examples from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

1) “We held a family meeting when Mom and Pops continued to deteriorate in their health. They had reached the stage where they couldn’t live alone any longer. Mom almost burned the house down, and Pops started roaming all over the neighborhood asking people where he lived. At the meeting, everybody had reasons why they couldn’t be primary caregivers. They either lived out of town or had other obligations they said interfered. Several of them mentioned that I lived in town and didn’t have as many responsibilities as they did. I don’t know how they could make assumptions like that about what’s going on in my life. I don’t tell them most of my personal business. Anyway, I finally agreed to be the primary caregiver, but only if they would all make a written commitment with me. We made a list of what everybody would do to help on a regular basis. I can truthfully say they all are doing what they promised, including contributing money to our parents’ care. Knowing I can always count on them helps me a lot and makes my parents proud of the way we are handling things.”

2) “If you look at who’s taking care of my daddy now, you wouldn’t know he had three other children besides me. The others hardly do anything for him, and I’m always asking them to help out. Before you start thinking he was a bad father when we were growing up, let me tell you he wasn’t. If you want to know the truth, he was too good to us. My trifling sisters and brothers just took him for granted. Now they know Daddy is confused with Alzheimer’s disease, so they use that as another excuse not to come see him. They figure he won’t miss them. My siblings are a disgrace. Everything is on me.”

3) “My mother was the kind of person who never should have had children. She was into drugs and the fast life for as long as I can remember. As a child, I prayed for her to change, but she never did. She left us alone a lot, even at night. Finally, my grandmother stepped up and raised my sisters and me. Bless her soul. She died six years ago. We made sure she didn’t want for anything. My mother is dying now, and I’m the only one who will go see about her. My sisters say she’s getting what she deserves for all those years she chose dope over us. I don’t judge them because I know how they feel. I’m still angry with her myself, but I come see about her anyway. I guess I want to be a better person than she is.”

Most people don’t set out to become primary caregivers. 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. Millions of people provide care to an ill or disabled adult. While many embrace their responsibilities and welcome the chance to serve others, there are also many who feel alone and abandoned. 
Caregivers all need ongoing support to be effective as caregivers and as healthy people themselves. Assistance is available from your city and state agencies. AARP assistance is available for caregivers at this website and these phone numbers: aarp.org/caregiving 

Phone: Toll-Free Nationwide: 1-877-333-5885

Toll-Free Spanish: 1-877-342-2277

International Calls: +1-202-434-3525

TTY user dial 711
    -English: 1-877-434-7598
    -Spanish: 1-866-238-9488

Hours: Monday - Friday from 7 a.m. - 11 p.m. ET


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

Tuesday, December 1, 2020

Do You Believe in Cancer and Coronavirus Miracles? Here's research.


Are miracles real or just wishful thinking when a good health prognosis is wanted? Healthcare worker have to be sensitive to patients' spirituality and religious beliefs regarding death journeys. As a hospice volunteer, I noticed that many patients held strong beliefs about miracles that were important to them when making decisions about their health care. What about you? Do you believe in miracles? If so, you have lots of company.

Progression of cancer is an important example of a healthcare situation that requires patients to make decisions about their treatment. How does belief in miracles impact patients’ decisions? A study of 158 patients with advanced cancer, whom oncologists expected to die within 6 months, were assessed before and after the visit at which scan results were discussed. Before the visit, religious belief in miracles was also assessed. 

Approximately 78% of the participants reported at least some belief in miracles, with almost half endorsing the strongest possible belief. Religious beliefs in miracles were highly prevalent and diminished the impact of receiving negative news of cancer progression. Assessing patients' beliefs in miracles may help to optimize the effectiveness of news received during discussions about scan results.

Kevin Swinks is a Maryland man hailed as a COVID-19 "miracle" survivor. He spent 30 days in the ICU and was on a ventilator three times while at MedStar Franklin Square where he almost died. With the help of his care team after 31 days, Kevin finally was well enough to go home and share his miraculous story. He says, "Life is sweet," and healthcare workers who took care of him say his story inspires them as they care for others.


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, November 2, 2020

Is Death Often More Pleasant Than We Imagine? (Research, Good Death Video 2:49)



Many people, even some who work in healthcare, believe that death is always something to dread. Are they right? Is death as bad as many people imagine it will be? Two near-death research studies compared the affective experience of people facing imminent death with that of people imagining imminent death. Interesting results of these studies are the following:

The first study revealed that blog posts of near-death patients with cancer and sclerosis were more positive and less negative than the simulated blog posts of non-patients. In addition, the patients' blog posts became more positive as death neared.

The second study revealed that the last words of death-row inmates were more positive and less negative than the simulated last words of non-inmates and that these last words were less negative than poetry written by death-row inmates. Clearly, these results suggest that the experience of dying, even because of terminal illness or execution, may be more pleasant than one imagines.

How can medical professionals improve the good death experience? What can a good death look like? At age 78, John Hawkins, a New York psychotherapist, was near death from lung disease and seemingly at peace. Hoping to inspire a conversation about facing death, he let photographer Joshua Bright take pictures of his last days on Earth at home in hospice care. John Hawkins had a good death.
   
 
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

Good Death Research, Death Blog Posts, Death-Row Inmates’ Deaths, John Hawkins, Joshua Bright, Susan Spencer CBS Report

Monday, October 5, 2020

Pandemic Hope and Healing (Video 2:29)

                                     


                                  "The wound is not my fault. 
                             But the healing is my responsibility."

 

Healing the spirit has often been associated positively in healthcare by patients and healthcare providers. That perspective has been associated with successful aging and a better tolerance of physical and emotional stress. The ability to cope with serious diseases and with isolation is especially important in older adults.  

 

With all the death and sorrow that the pandemic has brought into our lives, it is important that we do not overlook the good it has brought. For many, the pandemic has improved our quality of life by teaching us to analyze better how we spend our time. Without planning to do so, we have come to realize what really matters, what we really need to live and what we can do without. Many people have learned the rewards of giving to others, the blessing of gratitude, and the hope of future possibilities. This video inspires with a pandemic message of hope and healing.

 



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.

Tuesday, September 1, 2020

A Great-Grandmother Who Listened


                             


I was born and raised in the Jim Crow racial segregation of the South. I sat behind the signs for white people on the public bus and  stood when empty seats were not available for colored people. I drank clear water from the "colored" fountain and attended segregated schools that were not equal. I grew up experiencing America’s daily misery of racial injustice. Like many African Americans who remember being colored, Negro, and Black, my unimportance to the larger society was the norm.

But something special happened to me when I was very young. I bonded with my great-grandmother. I didn’t realize until I was much older that many children did not have or even know their great-grandmothers like I did. I knew a woman who smiled when I entered a room, a woman whose arms hugged me with soft wrinkled skin. I remember a vision crowned with gray hair that made her look like a queen. That was my Mama Lelia.

What really made Mama Lelia so special was that she listened to me, I mean really listened to whatever I had to say. I had plenty to say long before I started school. I think I was around four when I realized this wonder of a woman and I belonged exclusively to each other. I was much younger, and she was much older. We were two extremes creating a close partnership through casual conversations.

I shared everything I saw, heard, smelled, tasted and touched with her in words. She shared her patient power of paying attention. My words poured out from a place of knowing she was eager to hear me. Her gentle smile revealed enthusiastic acceptance that affirmed my worth when she responded with passionate praise such as “That’s so nice, baby” and “Just keep on doing your best!”  

In another world on this same Earth where I lived far away from Mama Lelia’s special haven-heaven, every day was a reminder of how insignificant I was to many people, mostly white people. Signs everywhere told me I was not welcome. Images of brown children were often not popular in a positive way. Because I was colored, I was unfairly denied many beneficial experiences white children enjoyed, including the use of a public library, a warehouse of words I craved, on the same block where I lived. 

Inside our little paradise where I was always appreciated, Mama Lelia listened to me with adoring attention that was far more powerful than either of us could have imagined then. Her loving listening when I yearned so much to be heard helped me know to this very day that my black life matters.


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, August 3, 2020

Staff Bullies in Older Adult Senior Living Communities: Anti-Bullying Culture



By Frances Shani Parker

The American Psychological Association defines bullying as aggressive physical contact, words or actions to cause another person injury or discomfort. When bullying becomes embedded in the culture of a senior living community, it can include staff members bullying residents as well as residents bullying other residents. One out of five seniors is bullied by peers. Bullied seniors are hurt through feelings of sadness and fear, along with difficulties conducting everyday activities. This post focuses on staff bullies.

An eldercare consultant, I am familiar with numerous senior resident stories related to bullying, including my own. This story involves two residents who were discussing how housekeepers do their jobs. One said she timed her housekeeper and discovered the housekeeper was cleaning her apartment in only seven minutes, which she felt was too short a time. The other resident agreed and asked if she had reported this to the housekeeping supervisor. The complaining senior responded, “No, I didn’t report it. When you report some of these workers, they get back at you by punishing you for telling on them. I had that happen to me before. It's too stressful.” In other bullying scenarios, r
esidents may silently
tolerate repeated and sometimes deliberate incidents of being served cold food, late food, damaged food, or no food at all to avoid a staff member's revenge. Physical neglect and abuse in caregiving are other issues. This is life for too many residents where staff bullying has become the unspoken norm in the culture of the community.

Bullying behavior is encouraged when building administrators are remiss in managing employees. Administrators must be proactive in management if they are serious about solving bullying problems and general work conditions in their communities. They should be familiar with workers' union contract agreements. Addressing sporadic bullying incidents without the context of a larger anti-bullying plan or even a basic employee progressive, corrective discipline plan usually fails.  Problems are rarely solved when administrators mainly resort to repeated unproductive conversations where bullies lie or convince them that they will change and don't. Bullies who receive no negative consequences from their wrongdoing have little or no incentive to stop and even more reasons to take pride in their manipulative skills over lax administrators. Unfortunately, residents are reminded too often that their needs are not a high priority, and the bullying continues.

When administrative assistance is not forthcoming, victims of staff and resident bullying should seek support from families and friends. 
An ombudsperson, who is an official public advocate, can give free advice or directly address residents' complaints that are not being handled well in senior communities. Residents can
document evidence with written descriptions and photos to send to appropriate agencies with their complaints. Under the Fair Housing Act, a landlord can be held liable for not protecting tenants from known forms of bullying. Legal options are available for civil rights violations. Within a bullying culture, the numbers of confrontations initiated by staff members toward residents are often much higher than suspected because of residents' reluctance to complain. While residents continue to suffer, administrators remain complacently unaware.  It would be easy to say it's all the residents' fault for not complaining more. But with a vulnerable population living in a culture of bullying, is it really?

More and more senior communities are making anti-bullying changes. The Internet, numerous senior organizations such as AARP, senior publications, books, videos, and anti-bullying workshops for senior communities can provide significantly helpful information regarding the creation of 
an anti-bullying culture. 
A formal anti-bullying policy driven by the administration with staff and resident input is included in a community handbook, so everyone shares common goals and references. Postings of "Bully-Free Zone" or "No Reserved Seating" in their buildings remind residents and visitors that everyone's rights are respected. Bullies in power at the expense of residents’ healthy quality of life, especially during a painful pandemic, disrupt the primary purpose of senior living communities where home should be a good feeling, not just a place to live.


You can view more helpful information including research and a video on senior bullying at my blog post titled "Older Adult Senior Bullying: No Home Sweet Home."

My LinkedIn article titled "Bullying Solutions in Older Adult Senior Communities" is another source of information.


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

Wednesday, July 1, 2020

Coronavirus (COVID-19) Body Disposal, Funeral (Video 5:45)


With so many people dying in the United States due to the coronavirus (COVID-19) pandemic, the process of death and body disposal have taken on new meanings. Being a funeral director in New York City has become a much busier and cautious undertaking. Included are high-level safety procedures focused on protecting at-risk lives of the living.

Social distance funerals are becoming more common in cases of COVID-19 deceased persons. Loved ones are not always able to communicate their feelings in person before the deceased dies. Unfortunately, research studies have not focused on outcomes and support for bereaved people during a pandemic. Research on the impact of COVID -19 grief and bereavement during other infectious disease outbreaks such as pandemics have tended to focus on survivors who had the illness and recovered. More focus should include innovative ways to promote connection and adapt rituals while maintaining respect. Strong leadership and coordination between different bereavement organizations is essential to providing successful post-bereavement support.

What is it really like being a funeral director during the coronavirus pandemic? This video answers that question while adding eye-opening information into serious issues involved in bringing deceased bodies to final closure.


  


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

Thursday, June 4, 2020

Old Love Wedding Anniversary Quarantined by Coronavirus (Video 2:30)



Let’s talk about love, more specifically, old love. That could include a heartwarming discussion about the 72nd wedding anniversary of Alden and Hester Barkel. Neighbors and friends for years before sealing their union in marriage, the 92 year-olds continue to nurture each other as often as they can. For Alden, that means visiting Hester, who lives with dementia, not once, but twice a day at the senior community where she lives. That’s where they rekindle the many memories they have made together through the years.

The question is asked: "Is there anything more beautiful in life than a young couple clasping hands and pure hearts on the path of marriage? Can there be anything more beautiful than young love? And the answer is given: Yes, there is a more beautiful thing. It is the spectacle of an old man and an old woman finishing their journey together on that path. Their hands are gnarled, but still clasped; their faces are seamed, but still radiant; their hearts are physically bowed and tired, but still strong with love and devotion for each other. Yes, there is a more beautiful thing than young love. Old love." Unknown

Blowing kisses with their hands pressed against the window glass separating them, Alan and Hester did not let the coronavirus (COVID-19) quarantine stop the observance of their many years of union celebrating their old love.


    
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

Tuesday, May 5, 2020

Coronavirus (COVID-19) Pandemic Poem for Older Adult Senior Communities



                               
                                               They know you, a bold executioner
                                               roaming their halls seeking humans
                                               to complete your pandemic purpose.
                                               Nights follow days in a quarantined
                                               existence of food, TV and hobbies.

                                              Thoughts of limited time increase
                                               survival of those determined to live.
                                               With distance, washing and masks,
                                               they wrestle with fear, while nearby

                                               victims scramble for scraps of life.
                                               Whispers saying, “She has the virus”
                                               and “He died yesterday” create new
                                               visions of people wracked with pain.
                                               Healthcare workers wearing full-body
                                               protection suits seem sinister, surreal,
                                               surprising in a place known as home.
                                               Posted photographs of deceased friends
                                               remind them of good times that will end.
                                               Their new normal is difficult, but doable.
                                               Mugged by history, they pray for peace.

                                                     
                                               © Frances Shani Parker


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

Monday, April 6, 2020

A Volunteer's Calling (Poem)

                                                    
“Defining Moments” is a poem I wrote after a series of events led to my becoming a hospice volunteer. Hospice volunteering crept up on me unnoticed during the HIV-AIDS pandemic that was one of the world’s most serious public health challenges. Early in the 1980's, the Centers for Disease Control reported five cases of AIDS in young homosexual men in Los Angeles, California. By 1994, AIDS had become the leading cause of death for all Americans ages 25 to 44.

Before the 1990's, I was not attracted to being actively involved in the healthcare field. I also wasn't skilled in caregiving at a personal level, sometimes feeling awkward around sick people in general. Nobody is more surprised than yours truly that I have been a satisfied hospice volunteer over 20 years involved with bedside caregiving in nursing homes, eldercare consulting, authoring a book, and eldercare blogging. You can read about my compelling transformation that includes a video in this LinkedIn article titled "Hospice Volunteer? No Thanks, Not Me!" (Video 3:25).


“Defining Moments” is one of 16 original poems at the end of each chapter of my book titled Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Several readers have told me that “Defining Moments” resonates with them when they read it. As a writer, I appreciate knowing when something I have written connects with other people. But I was especially surprised one day when a man I did not know well had actually memorized the entire poem and approached me while reciting it aloud. This was followed by his sharing a heartfelt explanation of a defining moment in his own life. Perhaps this poem will remind you of a defining moment in your life when past met future.

Defining Moments

They come without warning,
grab us in chokeholds of change,
fling us into outer space
where past meets future.
In this realm resonating
with first-time knowledge,
we awaken wide-eyed,
infused with wisdom
to turn around, stand still
or move forward with clarity.
No matter how they smack,
stroke, lift, drop, push, kiss
or kick us to get our attention,
when they finish their mission,
we are permanently scarred.

© Frances Shani Parker
 

 

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