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Monday, January 3, 2022

Kinship Care: What is it?


"Kinship care" is a popular term often used in reference to caregiving performed by a family member. I believe non-relatives who serve as committed caregivers during illness should also be included in the kinship care definition and treated as such. This story from my personal experience is one example of many that explains why.

Back in the 70's, the HIV-AIDS virus evolved into an epidemic/pandemic in LGBTQ communities. AIDS (Acquired Immune Deficiency Syndrome) is a disease with severe loss of cellular immunity and resistance to infections. I was a busy, Detroit, school principal who started helping Jake, a gay man I barely knew. He would come around my school sometimes at the end of the day to talk briefly with me while watching students leave. 

In his thirties, Jake confided that he suffered daily harassment from invisible people. His conversations were often bizarre and heartbreaking. One day, he mentioned his real-life boyfriend had left him. I phoned his family to get him more support. Unfortunately, they had given up on him and advised me to do the same. His mother deeply resented his homosexuality and gay lifestyle. 

Based on his appearance and actions, I suspected Jake had AIDS. I drove him and the "invisibles" to the hospital. He was admitted immediately and later placed with other AIDS patients in an isolated section of a nursing home. A young woman phoned me one day explaining that Jake was her biological father who had not raised her. She said she wanted to see him before he died and that she was busy taking care of her husband, her children, and being a waitress. 

The invisible people finally left Jake. Time passed during his death journey that included ongoing high fevers, chills, sores, weight loss, regular coughing, and breathing problems. This was my first major introduction to hospice care. I wasn't Jake's relative, a close friend of his family, or even a member of the LGBTQ community I supported. But I knew I was kinship.

                                                  *     *     *     *     *     *

I wrote the following poem about Jake that was read at the 13th International AIDS Conference held in South Africa. Jake was there in spirit enjoying all the loving expressions he missed in life.


Remembering Jake

A lonely leper with AIDS,

you existed in a colony of inhumanity,

seldom felt life's caring caresses.

While demons dragged your body

through gutters of deterioration,

you relinquished your confused mind

to unseen terrorists who stalked,

robbed you of much needed rest.

I watched your painful decay,

witnessed abuses by family and friends

treating you like toxic waste.

Rare handfuls of love brought

limited smiles in your leper's life.

Sweet death delivered your only peace.


Frances Shani Parker


Frances Shani Parker is author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes available in paperback and e-book editions in America and other countries at online and off-line booksellers. Visit Hospice and Nursing Homes Blog and Frances Shani Parker's Website.

Sunday, December 12, 2021

Empathy for Patients and Older Adults

Would you describe yourself as a person with empathy for supporting emotional needs of others? Were you born with this ability? It may surprise you to know that you were not. This fundamental force of morality, this psychological phenomenon, is actually a learned behavior. Scientific testing with animals, infants, adults and robots suggests that empathy viewed as an automatic process that catches the feelings of others is actually constructed in the course of development through social interactions, not through genes.

The ability to empathize is especially important in healthcare professions where biases can contribute to healthcare disparities. Sometimes the bias is overt, even intentional. Other times, it is done implicitly, unconsciously, but still doing harm. Healthcare providers must be able to better recognize situations where they can offer empathy in addition to problem solving. Patient care is more than just physical healing. Good healthcare provider care includes building a connection that encompasses a patient’s mind, body, and soul. It includes standing in someone else’s shoes, feeling what that person feels, and responding in the appropriate manner.

One way of learning empathy in general living is by consciously putting yourselves in the position of others in an effort to better understand what they experience. Older adults are a growing population that more people are having contact with as caregivers and in general living. By simulating the experiences of many older adults, everyone and especially young people can develop deeper understanding of various issues of old age that they may not have considered. This helps them develop more empathy for the older adult population and a better understanding of how they can navigate their own aging.


Frances Shani Parker is author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes available in paperback and e-book editions in America and other countries at online and offline booksellers. Her blog is Hospice and Nursing Homes Blog. Visit her website at http://www.francesshaniparker.com.

Sunday, November 7, 2021

Sexuality, Healthcare, and Older Adults (Video 3:24)

  

In spite of what you may have thought or heard, many older adults enjoy active and fulfilling sex lives into their later years. In fact, they even tend to live longer. Unfortunately, too many people avoid discussing sex when it relates to older adults. This often gives an inaccurate portrayal of the role of sexuality in aging adults' lives. Sex doesn't belong to youth, and safe sex practices belong to all ages.

Research shows that older adult sexuality is usually only discussed in healthcare settings when patients initiate the discussions. More information initiated by healthcare providers would keep older adults better informed about evolving sexuality issues that have changed through the years. Primary care providers and nurse practitioners may need more older adult sexuality training themselves to meet the needs of this growing and changing population when they initiate more sexuality discussions with patients.

Any discussion of older adult sexuality must include the importance of their using safe sex practices. HIV/AIDS is an illness of older adults, too. Just because many women in this population are postmenopausal does not mean they should not use condoms with vigilance. Online dating and more sexual experimentation with drugs can promote the likelihood of unprotected sex that some older adults may underestimate.

The following video titled "Sexuality and Older Adults" from healthcare collaborators at Johns Hopkins Medicine shares important healthcare information in detail.

                                  
                            


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

Saturday, October 2, 2021

School-Nursing Home Partnerships (Service-Learning, Dementia)


I have had many occasions as an educator to implement and consult on intergenerational partnerships between schools and nursing homes. This was done through service-learning, a teaching and learning approach that connects learning with meeting community needs. Included in curriculum learning objectives, service-learning is used by many schools and community organizations. For example, after students learn how to write letters at school, service-learning could include writing letters to nursing home residents who would benefit from receiving them. Students can also do school performances at nursing homes.

A growing body of service-learning research shows that students benefit academically and affectively from 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 is okay. Dementia is understood with relevance and meaning. Students are open to the experience of being with the elderly and the challenged. They take pride in the roles they play as visiting caregivers who enrich lives. They empathize with the realities of residents living with dementia.

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

A Student's Service-Learning Reflections

I know you erase your
roommate sometimes, 
take distant trips in your mind, 
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 your words 
make me feel better,
feed my heart with praise,
help me care about others
the way you care about me.

© Frances Shani Parker


Note: Winner of the National Service-Learning Partnership Trailblazer Award, Frances Shani Parker, a hospice volunteer, writer,  eldercare consultant, and retired Detroit Public Schools principal, has been instrumental in implementing service-learning in school districts across America.

You can read about fourth graders' nursing home research on ageism stereotypes here.

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. Visit 
Hospice and Nursing Homes Blog and Frances Shani Parker's Website.

Wednesday, September 1, 2021

Are You Asking People to Tell You Your Name?

                                                                                                                             

Seriously, if you do this, please stop asking people living with dementia to tell you your name when you greet them. Don't start the conversation with a test they might fail along with your hurt feelings when they do fail. Just say your name and who you are. If they decide to give you another name, that may be okay, too. Don't say that person has been dead ten years, and you told them that 925 times. Don't say that dead people are never coming to visit them again, so quit asking about them or you will take them to the cemetery to see their graves as proof.

Can we all just get along and lighten up? As a hospice volunteer over 20 years mostly in Detroit nursing homes, I have learned there is no one way of handling dementia issues. A lot depends on the level of the disease a person has and their reality. Personally, I have enjoyed impersonating other people sometimes. For example, I have pretended to be a male hospice patient's deceased wife. When I entered his room the first time, he grinned widely, called me Judy, and said how glad he was to see me. Instinctively, I decided to try being Judy, even though I knew from the brief information I had been given about him that Judy, his deceased wife, had been dead several years.

From that day until he died, I entered his reality world as Judy whenever he decided that was who I was. Although neither one of us sang too well, we loved crooning old Motown songs when we reminisced about our dates at Belle Isle Park when we were married. Passing ships, seasonal surroundings, and our general joy were back-in-the-day scenarios we revisited. I often let him take the lead with his descriptive memories that were enlightening, amusing, and welcoming to me. I felt like I was right where I belonged being Judy. I knew we were making progress on some level.

When each visit ended, we BOTH had created more wonderful memories of our special time together at the nursing home. We could recall later with pleasure our experiences featuring a union of minds that made perfect sense to us. And I knew that I could always go back to being Frances Shani Parker in my own reality world any time.


Frances Shani Parker, an eldercare consultant and retired school principal, is author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing HomesThis book is available in paperback and e-book editions in America and other countries at online and offline booksellers. Visit Frances Shani Parker's website.                                                                   

Monday, August 2, 2021

Life After Death Dementia Story


This true story is from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

When Mamie Wilson (pseudonym) became my hospice patient, she had several unusual qualities that made me wonder. At sixty-five, she was the youngest person assigned to me after years of volunteering at various Detroit nursing homes. She had the same name as my grandmother, and I had her grandmother's name. When we made these discoveries during our first meeting, we took them as signs that we were destined to have a great patient - volunteer relationship. In time, however, I learned that the most unusual thing about Mamie was what she said.

“Is your mother alive?” Mamie asked me one day.

“No, she died a few years ago in her eighties,” I responded.

“You know, you can still be with her and talk to her if you want to.”

“Oh, I know we can still communicate.”

“No, I mean for real. You can be with her in person. Just get her clothes together and her shoes. Don’t forget her coat. They say it’s cold outside. Take them to the cemetery where she’s buried. Just set them on top of her grave and wait. She’ll rise out of her grave and put them on. Then you can take her home with you. In every way, she’ll be the same person you knew. Other people won’t be able to see her, but you will.”

“Hmm. I’ve never heard that before.”

Mamie responded, “Most people haven’t. I know about it because I did it with my two grown sons. They were both murdered on the same day in a drive-by shooting. I didn’t know how I would get through the pain. Finally, I took their clothes to the cemetery and did what I just told you. Both of them came home with me. It was the best day of my life. I got my sons back.” Satisfied, she smiled.

Some people will dismiss this story as crazed comments of a demented woman. But if you really listen, you’ll hear the magnificent empowerment in her words.

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

Monday, July 12, 2021

Asexuality Among the Old and Young (Video 4:55)


                                                                      
Asexuality is a medically approved sexual orientation including about 1% of people who represent millions worldwide. Because you may have contact with them in any area of your life including your workplace, it's important to understand their concerns in adjusting to a predominantly heterosexual, sex-oriented society. While the behaviors of asexual people vary, they have the same emotional needs as everyone else. They may feel embarrassed, isolated or confused because they are different from the standard society conveys as normal sexuality. They are a diverse community with people experiencing relationships in various ways. This includes loving relationships in which they have no sexual attraction and are not trying to be abstinent or celibate. Emotional and romantic attractions are not the same as sexual attractions.

People often wrongly stereotype many older adults as being asexual simply because they are old. The reality is that older adult asexuals have never had any interest in sex or sexual attraction towards others. Because the media focus on asexuality emphasizes younger adults, older asexuals have more difficulty finding resources and supportive groups to share their concerns in an environment of acceptance. Fortunately, the Asexual Visibility and Education Network (AVEN) hosts the world's largest online asexual community and a large archive of resources that can benefit anyone interested in this topic. 

What were the probable concerns of older adults when they were young? In the following video titled "5 Asexual People Explain What "Asexual" Means to Them," young asexual people share their experiences and provide better understanding of asexual life in general.

                     


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and ebook editions in America and other countries at online and  offline booksellers. Visit my website at http://www.francesshaniparker.com/.    

Monday, July 5, 2021

Black Children and Healthcare Disparities (Video 2:48)


Healthcare disparities are inequalities that exist when members of certain populations do not benefit from the same healthcare as other groups. H
ealthcare disparities victimize adults and children. Unfortunately, for many Black people, disparities are cradle-to-grave tragedies beginning at birth. Disparities include not only the high percentages in disease rankings such as heart disease, cancer, stroke, and diabetes, but also procedures such as pain treatment.  A disturbing study of America’s emergency rooms reveals that Black children receive substantially less pain control for appendicitis.

In America, Black healthcare disparities are a sickness in the healthcare system, a systemic overt-covert racism or stereotypical racial perceptions of pain that is not being addressed effectively. This is not only a healthcare issue, but a moral one. While some may see this only as a Black issue, it isn’t. Healthcare disparities impact not only individuals victimized by them, but also their families, their communities, and the nation. With generational suffering and repercussions on many levels, illnesses create long-term economic burdens and major losses of productivity.

The following video addresses a study of America’s emergency room disparities revealing that Black children receive substantially less pain control for appendicitis than non-Black children.




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. 
Visit my website at www.francesshaniparker.com.

Sunday, June 13, 2021

Male Caregiver Interview: Frances Shani Parker and Frank Gasiorek

                           

                            Catherine and Frank Gasiorek

I met Frank Gasiorek during a time when he was devoted to taking care of his ill mother who died. Like millions of people carrying personal stories others will never know, he told me he was a caregiver after I happened to mention my involvement with eldercare. According to AARP, the typical caregiver is a middle-aged woman caring for a relative, often her mother. Nowadays, 40 percent of the 40 million Americans caring for loved ones are men. They may accept a caregiving role while having little experience and may be less inclined to reveal their problems to others. 

From my conversations with Frank, I began to view him as an excellent role model for caregivers in general, especially men. In this interview with me, he shared 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 factors.  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 responsibility entails?

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. 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 caregiver experience. 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 in America and other countries and in paperback and e-book forms at Amazon booksellers. Visit my website at www.francesshaniparker.com.

Monday, May 3, 2021

Cremation Pros and Cons



Cremation is definitely in the mainstream these days as a method of body disposal. People are finding interesting ways to dispose ashes or cremains of loved ones. Traditionally, cremains are often stored by families who keep them in urns and other containers that vary in their uniqueness. These may include vases with pedestals or even personalized teddy bears with hidden pouches. Teddy bears can be sewn from the deceased person’s clothes. Among other uses, cremains are being used in jewelry, shotgun shells, and fireworks. In terms of destinations, cremains can be stored in cemetery plots, mausoleum, or scattered in a garden or body of water. They can even be sent aloft into outer space into luna orbit.

But love for cremations is not embraced by everyone. Even though they are cheaper than traditional burials and better in terms of ecology, some view cremations as morally inadequate. They believe cremations include "the destruction of community memory, and, by extension, community and individual identity. Cremations deprive the living of these benefits, while also treating the dead in a way which goes against common intuitions about personhood, anthropology and respect for the will of the deceased.” They believe death and the corpse are too important to be marginalized by cremation, depriving individuals and communities in terms of social ethics.

Like many other death-related practices, people should make plans in advance regarding disposal of their bodies in a manner they approve and want. If cremation is selected, they should also plan for disposal of the cremains. This includes making sure they are following the law regarding where they do the disposal. Disposal at Disney World and Disneyland, a popular trend for some, has become a nuisance 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.