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.

How to Be a Great Hospice Volunteer

How to Be a Great Hospice Volunteer 

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

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 healing and growth. 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 living from their perspectives. Focus on advocacy for improving their quality of life.

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 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 moments for you to positively impact lives. When you make those connections happen, rainbow smiles will come.

© 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

Ten Steps to Being a Great Hospice Volunteer

Ten Steps to Being a Great Hospice Volunteer

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

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 healing and growth. 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 living from their perspectives. Focus on advocacy for improving their quality of life.

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 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

You can read about my personal journey in becoming a hospice volunteer without realizing I was one here: https://www.linkedin.com/pulse/hospice-volunteer-me-frances-shani-parker?trk=mp-author-card

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

Approaching Death: Dying Symptoms, Caregiver Support (Video 5:31)

The body knows when it’s time to slow down and die. Each body will die in its own way and in its own time when the process starts. I have been asked on several occasions to explain some of the circumstances that may be present when death is near. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes addresses that:

“Among symptoms of impending death, there might be decreases in food intake, swallowing, communication; and increases in sleep, weakness and spiritual awareness. The latter might include speaking to or appearing to look at, or dreaming about persons who have already died. Patients may become incontinent, agitated, confused, withdrawn, and congested. Bright light in patients’ eyes should be avoided. Patients should be turned gently when necessary. Hospice care should provide every reasonable effort to control pain and stabilize patients to a plateau of comfort. The hospice nurse or doctor can explain any changes that cause concern during the dying process.

Some caregivers become upset when dying patients lose their appetites. Because they view food as nurturing, they want to keep giving patients more food than they need. It is important to keep in mind that dying patients with little or no appetite are not starving or in pain from hunger in the manner that is commonly understood. They are responding normally to the body’s breaking down as part of the dying process. Swallowing may be difficult for them and could lead to choking when food is forced into their mouths. They could also become nauseous and vomit from being forced to take in food they do not want. Dying patients may also want less to drink. The insides of their mouths can be moistened with droplets or a fine spray, and a lip cream can be used, especially if they are breathing through their mouths. It is not unusual for breathing of dying patients to fluctuate from quiet to noisy or to have an irregular rhythm."

As much as possible, caregivers should remain calm and give patients reassuring presence. This video titled “Palliative Curriculum - Part 6 - Last Hours of Living” presents a scenario about a daughter’s concerns during her mother’s final days.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. 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. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.

2)    They noted staff members who did not fully inform them about what to expect in the dying process.

3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.

4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.

These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice QT.mov” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”

Eldercare Robot: CareBot Companion and Caregiver for Older Adults (Video 2:19)

We can pretend that robots are only for sci-fi movies, but they are already being created to make life easier for older adults. Artificial intelligence of robots makes them especially good companions for older adults living alone or those in need of caregiving attention. What is artificial intelligence? This means the robot not only has the ability to navigate safely in its surroundings, but it also has the intelligence to do meaningful caregiving.  Maybe that’s why they are called CareBots.

The GeckoSystems CareBot is a robotic eldercare system that allows family members to care for older adults from afar. According to Martin Spencer, President/CEO of GeckoSystems, CareBot is a new kind of companion that “always stays close to the care receiver, enabling family and friends to care for them from afar. It tells them jokes, retells family anecdotes, reminds them to take medication, reminds them that family is coming over soon (or not at all), recites Bible verses, plays favorite songs and/or other music.” Even the voice can be customized.

From a security point of view, a CareBot alerts family members when unexpected visitors or intruders are present. It notifies designated caregivers when a potentially harmful event has occurred such as a fall, fire in the home, or even if no one has been present for too long. It responds to calls for help and notifies those persons that the caregiver has designated.

Referred to as Emily, the CareBot in this video serves as a helpful companion to Doris by keeping track of her taking medicines, reminding her about TV shows, and performing other tasks that improve the quality of Doris’ life.

What do you think about having Emily or another CareBot living with you or helping an older adult in your family?

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Hospice and Nursing Homes Blog

Dementia (Alzheimer’s) Caregiving with Understanding and Patience (Video 5:31 mins.)

Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s disease is the leading cause. According to the Alzheimer’s Association, this disease, which advances at different rates, destroys memory and the ability to learn, reason, make judgments, communicate, and perform daily activities. Patients may also experience changes in behavior and personality such as anxiety and delusions.

Dementia is like a fluttering bee. As a hospice volunteer in nursing homes, I never knew when it would make honey or sting. There were times when residents with dementia were rude or violent. I have seen one slap a CNA’s (certified nursing assistant) face with such force I thought the CNA would fall over. To her credit, she took a deep breath and walked away while another CNA intervened.

Residents with dementia enjoyed talking about the past and embellishing their stories. Sometimes they remembered detailed incidents from childhood and minutes later couldn’t remember where they were. They needed encouragement when they became afraid. I tried to analyze what caused certain behaviors. Distractions helped them change their thoughts. Just like everyone else, they felt respected when their opinions mattered. I let them make some decisions, usually limiting the choices to two, so they wouldn’t feel overwhelmed.

Caregivers and other loved ones of those with dementia have to remind themselves often that patients’ repetitious questions and other unintentional behaviors are manifestations of the disease. This video titled “What is that?” reminds them (and all of us) to dig deeply into wells of themselves for understanding and patience.

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

Hospice and Nursing Home Poem: Hospice Volunteer Reflections

Over 400,000 hospice volunteers across America enhance life in patients’ days. This poem is from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” which includes an original poem after each chapter:

Reflections of a Hospice Volunteer

I leave my car and walk into a world with many fates.
The people live reality where three words dominate:
“Nostalgia” brings memories that make them question why.
“Delusions” create fantasies that often come alive.
“Anticipation” beckons the beginning of each day.
A visit, party, special news⎯what is on the way?

Sedonia tells me stories of how life used to be.
Many things seem different now. She’s almost ninety-three.
Moochie shields unseen friends he pledges to protect.
I wonder if he sees and hears the friends he manifests.

Dexter smiles and says with pride while waiting for his son,
“All my children visit me, and each is Number One.”
Pearl yells, “I want some cake, and bring it just for me!”
She thinks that I’m employed here. She sees me every week.

An empty bed reminds me that someone else has gone.
Next week, I’ll see someone new. Life’s cycle will go on.
Juan trails me through each room while planning his escape.
“I have somewhere to go,” he pleads. I stop him at the gate.

I leave this special world today with wisdom strong and rare,
Respecting every circumstance that brought each person there.
Our futures are unknown to us like roads with endless curves.
I drive away feeling good, happy that I served.

© Frances Shani Parker


You can hear me reciting this poem on YouTube.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog