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.

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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.

Can Volunteer Service Choose You?

                    

If you are a volunteer, have you ever thought that you didn't choose volunteer service, but that it chose you? I have been a hospice volunteer for twenty years, most of them in urban nursing homes. But I can remember when I dreaded being around sick people. Mostly, I felt I didn't have skills to do the right things in a healthcare environment where somebody might get hurt if I messed up. Once in high school as part of a school club, I visited a nursing home where I fed a woman jello. Years later, jello still reminded me of her and the nursing home, but not in a good way. Volunteering with sick people? Nope, no way! Not me!

So what changed me? Life did. During the 90's, AIDS caused by the HIV virus was like a pandemic in the LGBTQ community. Infected people were often ostracized, criticized, demonized, and dying. I was principal of an urban public school in an area of high poverty, crime and homelessness. Although I had plenty to do on my crowded plate, I felt right at home. However, over a three-year period, I was thrust into life-threatening dilemmas of two gay men I hardly knew. They were my introductions to long-term care of the terminally ill.

Jake, who was in his 30's, came around to talk sometimes after school dismissal. He was showing signs of dementia. He complained about being harassed by invisible people all the time. His boyfriend left him, and he had no family support. I knew he couldn't navigate the healthcare system alone. Eventually, I convinced him and his unseen tormenters to pile into my compact car, buckle up, and let me drive everybody to the hospital where Jake was admitted immediately. Later, he was placed in a nursing home that he said the invisible people did not like. They left, but I looked out for him until he died several months after that.

I thought that surreal scenario would never happen again, but it did a few months later with a man named Sam who was in my exercise class. I didn't really know him, but I asked him what was wrong when I saw him crying in the parking lot one day after class. He told me he had AIDS and had just lost his job because he had missed too much work. He had little family support because they knew he had AIDS and were reluctant to be around him or go to his house. I found him an HIV-AIDS support group which he loved, helped him on his medical journey, and learned more about healthcare and myself in the process. I believe good service is always win-win when I am open to my own growth. Fortunately, his condition improved greatly when better medications became available. 

Several months later after Sam had moved on, I met a friend I had not seen in quite a while who told me she was a hospice volunteer. I actually asked her what a hospice volunteer does and was surprised when I realized that was what I had been doing with the two men. I had been a hospice volunteer all that time and didn't even know it. A few weeks later, I saw a newspaper ad recruiting people for hospice volunteer training. I decided to take the classes and become certified  in case another very ill person showed up in my life. 

Of course, the rest is history. Terminally ill people have come into my life often as patients assigned to me in various nursing homes where I have experienced compelling challenges and satisfying rewards. My book, Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes shares captivating stories, original poems, and more about the nursing home world and hospice volunteering that chose me.

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. Frances Shani Parker's Website

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.

Frances Shani Parker's Website

End-of-Life Phenomena (EOLP): Hospice Volunteer Research

I have been a hospice volunteer for 20 years, mainly giving bedside care to residents in Detroit, Michigan nursing homes. Most of my assigned hospice residents shared rooms with one to three other residents. During weekly visits, my residents and I have discussed numerous topics. Occasionally, conversations included end-of life phenomena (EOLP) in which they spoke about visiting or being visited by spirits. Discussions about spirits created opportunities for them to express emotions openly about death while reflecting on life. They enjoyed describing their visitors and their trips. Their detailed comments explained, not only whom they saw, but also their clothing, scenery, and pets. 

Many hospice volunteers and healthcare workers have had similar conversations with patients about these phenomena. Researched end-of-life phenomena (EOLP) surveying thirty-nine hospice volunteers revealed the following:

1) Forty-nine percent of the volunteers either had personally witnessed EOLP in their volunteer work and/or had a patient or patient's family member report EOLP to them. 

2) More than half of the volunteers agreed that EOLP influenced their religious beliefs and their spirituality in a positive way.

3) Eighty-nine percent of the volunteers indicated that they had never received any training about EOLP. Nearly all of the volunteers were interested in learning more about EOLP.

4) After completing the survey, fifty-nine percent of the volunteers shared EOLP stories they had either personally witnessed or heard. The most frequently reported experiences involved deathbed visions.

Deathbed visions have also been my own most frequent EOLP topic in conversations with my own residents. I understand that some people say these spirit sightings are medical, chemical reactions in the brain or hallucinations. I also know that others speaking from emotional, spiritual perspectives say they are angels, spirits, or ghosts who are there to connect with them. For all those reasons, I do think these sightings should be reported to appropriate healthcare workers. 

Personally, I go along with my residents’ EOLP explanations because the experiences have always been comforting and positive to them. I think about a Song of Solomon book quote from Nobel Laureate-winning author Toni Morrison: “What difference do it make if the thing you scared of is real or not?” In other words, these visions happen, and they are real to residents. Readers can draw their own conclusions:

(Below is an excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. )

“What did you do today?” I asked Rose after feeding her.

“Me? I’ve been spending time with my people. I enjoyed myself a lot.”

“Hey, that’s great. Did your relatives drive in from Chicago?”

“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful scenery everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”

“Wow! I guess that’s a place you’ll want to visit again.”

“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”

“Thanks. I would really appreciate that.”

(It's good to have connections.)


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

Dementia Doll Therapy and Caregivers (Research, Video 3:05)

“Does this baby have a heartbeat?”

I have served several years as a hospice volunteer in Detroit, MI nursing homes where I have interacted with many residents who had dementia. They often needed various stimuli to become engaged in approaches that were more likely to be successful with them from a person-centered perspective. Doll therapy was often successful. This excerpt from my book Becoming Dead Right is an example :

“What’s your baby’s name?” I asked while exploring the reality of a hospice resident who had dementia. Susan, who was the resident, and her doll stared at each other, grinning as if they knew secrets from ancient times. And maybe they did. She looked at me, pointed to her doll and said, “She’ll tell you her name when you come back with cookies.” (Very clever baby!)

Doll therapy research focused on reducing behavioral and psychological

symptoms of dementia has increased in clinical practice. The aim of the research discussed in this post was to measure the impact of doll therapy on people with severe dementia and the related distress and impact on everyday behavior of formal caregivers. Twenty-nine nursing home residents aged from 76 to 96 years old and who had severe dementia (Alzheimer's or vascular dementia), took part in the experiment. They were randomly assigned to an experimental group that used dolls or an active control group that used hand warmers with sensory characteristics equivalent to the dolls. Effects of doll therapy on caregivers’ everyday abilities such as eating behavior were also examined. 

This research concluded that only the doll therapy group showed a reduction in behavioral and psychological symptoms of dementia scores and related caregiver distress. Doll therapy did not benefit eating behavior of caregivers, however. 

As a hospice volunteer, I observed how easily many residents with dementia enjoyed their close relationships with dolls and stuffed or robotic animals. In this video, a caregiving daughter does doll therapy with her mother who is past middle stage dementia. I found this video particularly interesting because, unlike many residents I have observed, this mother seems to know her doll is not a real baby. But she still enjoys nurturing the doll. She also continues to question if the doll really isn't real. The daughter wonders if the doll therapy is truly appropriate for her mother. This video shares the mother’s response. (Do you remember playing with dolls as if they were real when you knew they weren’t? I do. )

If you liked the video above, you'll appreciate this one with a man enjoying his pet therapy cat: https://www.youtube.com/watch?v=JxSvkynCfH0

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

Nursing Home-School Similarities, Connections (Video 2:40)

Years ago, I was principal of a schoolwide, service-learning school where all staff and students performed service in the community. Students' service was connected to the school curriculum, giving them opportunities to use what they learned to improve the community. For example, fourth graders learned how to write biographies by interviewing residents of a local nursing home. Later, each resident was given a booklet with all the residents’ biographies so they could learn more about one another.

My own service included weekly hospice volunteering in Detroit, Michigan nursing homes. It didn’t take long before I observed that nursing homes and schools have several important similarities. Both have cultures that impact people in institutions. A paradigm shift in how these institutions are often perceived, not only by the public, but also by those who work in them, was long overdue. This needed transformation is often referred to as person-centered culture change, a movement that focuses on values and practices that respect the input of everyone involved with the institutions.

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

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

Sometimes older adult communities and schools have the great pleasure of bonding into something wonderful together. The following video features Providence Mount St. Vincent in Seattle, Washington. It is a typical community home to about 400 residents. What really sets this facility apart from many other communities like this is the preschool, the Intergenerational Learning Center, which provides children and older adults with opportunities to bond. These young children learn about acceptance of older adults while they are being nurtured. At the same time, the older adults develop a greater sense of self-worth and foster social interactions. That's a win-win relationship for everyone.

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

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Read “10 Rules of the Education Game for Educators” by Frances Shani Parker here.

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