End-of-Life Dreams and Visions (ELDVs)

                                               

Research  reported  in the American Journal of Hospice Palliative Care  concludes that positive general attitudes toward end-of-life dreams, visions, (ELDV) and positive perceptions are correlated with better bereavement outcomes. Patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for families and patients.

The following is a true nursing home experience that my hospice patient shared with me about an unusual trip she said she had taken the day before I visited her:

(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 sights to see 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.”

“How old did you tell me I was?”

“You’re ninety-nine, and you’ll be one hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred five. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be over one hundred.”

And that’s exactly what she did.

Frances Shani Parker is an eldercare consultant, author, speaker, workshop facilitator, hospice volunteer, and retired public school principal. She serves on the board of the Institute of Gerontology at Wayne State University in Detroit, Michigan. Her book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes gives a groundbreaking account of her insights and experiences with hospice, nursing homes, caregiving, dementia, death, bereavement, and service-learning. Visit her in cyberspace at http://www.francesshaniparker.com.

Alzheimer's Dementia Reflections (Video 4:44)

                                                                                                                                           

As 2023 approaches, let's reflect on Alzheimer's dementia in terms of where we are and where we may be going in the future. We can begin by defining what dementia is in general terms. Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. According to the "Journal of the American Geriatrics Society," by the year 2025, an estimated 7.2 million Americans are expected to have Alzheimer's disease, the most common form of dementia that accounts for 60% to 80% of dementia cases. By 2060, unless there are major medical breakthroughs, current numbers will almost double.

Clearly, Alzheimer's is a challenge many people must face with preparedness by becoming as informed as possible in putting forth their best efforts in ways that benefit themselves as well as meeting needs of those living with the disease. People living with Alzheimer's may experience changes in behavior and personality such as anxiety and delusions.  Like a fluttering bee, Alzheimer's can leave caregivers wondering when the person in their care will perform in ways that will make honey or ways that will make them sting. How caregivers approach and handle their roles during their interactions is very important. Local Alzheimer's Association chapters can offer needed local assistance to caregivers. The 24/7 Helpline Phone Number  is 800-272-3900. 

The following ageless video below titled “It’s a Sparrow” is a moving example of how a negative caregiving experience can evolve into a positive one through thoughtful reflection. 

              

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 Frances Shani Parker's Website.

Dying: Being in Control (Research, Hospice Story)

Are you ready to die? Because I have been a hospice volunteer many years, people sometimes assume that my patients and I talk about death a lot. We don't. But death-related discussions are important parts of advanced care planning and palliative care. Some people also assume my volunteer visits must be depressing because no one really wants to die. Wrong again. Some of my patients have stated they looked forward to death and gave reasons that had nothing to do with depression.

People have complex attitudes about death, dying, and ethical considerations. A Massive Open Online Course (MOOC) titled “Dying2Learn” provided an opportunity for researchers to explore societal and personal attitudes about wishes and beliefs regarding death and dying. Among research results highlighted were desires of patients to exercise choice and control in relation to dying. Some individuals wanted control while preferring not to know that they were dying. Others wanted to know as much as possible and still be more in control. Even after legal matters related to death were in order, some patients had concerns that others might not consider important, but the element of control still mattered.

All this talk about control reminds me of my hospice patient named Rose. Are you ready to die? Rose was. This is what she said to me about her upcoming death that clearly indicated her need for control:

She began by asking me, “How old did you tell me I was?”

I responded, “You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did because she felt she was in control.

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

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

The Georgia Mass Choir - "Come On in the Room"

During difficult times locally and around the world, this song showcasing

an elder may offer needed support for many in their personal "rooms."

"Come On in the Room" by Georgia Mass Choir

Album: Back to Church

---

Come on in the room.
Come on in the room.
Jesus is my doctor,
and He writes out all of my prescriptions.
He gives me all of my medicine in my room.

There is joy, joy in the room,
joy in the room.
Jesus is my doctor,
and He writes out all of my prescriptions.
He gives me all of my medicine in my room.

Spirituality, Cancer, and Aging

Spirituality has often been associated positively in healthcare by most patients. Healthcare providers should be sensitive to this when they make healthcare decisions impacting patients and their families. They should provide opportunities for them to share their religious and spiritual beliefs and offer support when possible.

By understanding the importance of spirituality in many people’s lives, healthcare workers and other caregivers can create better plans of encouragement for patients. These plans could include support groups for them that involve yoga, meditation, nature, music, prayer, or referral to spiritual or religious counselors.

For older adults, cancer is a major cause of morbidity and mortality. This palliative care cancer review examines the influence of spirituality on aging in general and on the management of older cancer patients.

These are the conclusions:

1) A spiritual perspective has been associated with successful aging, better tolerance of physical and emotional stress, and the ability to cope with serious diseases and isolation.

2) Spirituality has been associated with decreased risk of suicide and depression and is especially important in older adults.

3) Spirituality has also improved the quality of life and reduced the risk of disease and death for the patient's caregiver. It may render the palliative care of cancer more effective and may also aid in detection and management of spiritual pain, which may prevent healing at the end of life.

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, Frances Shani Parker's Website

Becoming Dead Right in 10 Steps

                                                                            

                                                   

Life is a journey. Death will come when it comes, no matter how often the topic is avoided, how forcefully technology wrestles it to the ground, or how sincerely pleas for more earthly time are requested. Consider using these ten steps featuring scenic routes on your journey to becoming dead right:

Ten Steps to Becoming Dead Right

1.  Accept death as part of life.

Death will come no matter how often the topic is avoided or how forcefully technology wrestles it to the ground. 

2.  Listen to the Universe.

Some say it’s the Universe. Many use God, Higher Power or other names. If you believe you are part of an infinite enlightenment, be still and listen.

3.  Expect rainbow smiles.

Rainbow smiles are joyous, healing, memorable moments that come more often when anticipated.

4.  Live a healthy lifestyle.

Practice habits of healthy living in all areas of your life.

5.  Be informed and proactive.

Keep abreast of what’s happening in life. When circumstances arise that can benefit from your input, apply what you know.

6.  Do your best.

You can’t solve every problem or be everything to everybody. Do what you can.

7.  Give service to others.

Complement others by fulfilling needs through service. Both server and recipient benefit from this partnership.

8.  Be grateful for blessings.

Blessings come like wondrous celebrations held in your honor. Let appreciation reign!

9.  Put death wishes in writing.

Fulfillment of your end-of-life wishes will often depend on what you discuss and record now. Get medical, financial, and property decisions in order.

10.  Have a dignified death journey.

Breathe in your final phase of life with contentment. Experience a dying process that brings beauty and calm to your personal letting go.

© Frances Shani Parker

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes 

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Dementia Violence in Healthcare

As a hospice volunteer in Detroit, Michigan nursing homes, I viewed dementia as a fluttering bee. I never knew when it would make honey or sting. There were times when nursing home residents with dementia were rude or violent. I have seen a resident slap a nurse assistant (CNA) in the face with such force I thought she would fall over. To her credit, the CNA took a deep breath and walked away while another CNA interceded to work with the resident. The resident probably forgot the incident soon afterward. During violent situations involving residents living with dementia, caregivers have to protect themselves, restrain residents if they can, but resist expressing rage and fighting back.

Aggression and violence in nursing homes, unfortunately, is not as rare as many may think. It may involve victims who are too fragile to protect themselves. Some have even died as a direct result of being physically assaulted. Empathy for residents is always important. Spending time with them and getting to know them, their temperaments, their personalities, their likes and dislikes greatly impact caregivers' abilities to manage them in healthcare settings. 

The YouTube video below titled "Cursing or Verbal Aggression" illustrates one way of addressing these problems. This video was produced by the Murray Alzheimer's Research and Education Program in partnership with the Psychogeriatric Resource Consultants in Niagara Region and Hamilton-Halton.

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 various booksellers. Visit Frances Shani Parker's Website.

Dying in Control (Research, Hospice Story)

Are you ready to die? Because I have been a hospice volunteer many years, people sometimes assume that my patients and I talk about death a lot. We don't. But death-related discussions are important parts of advanced care planning and palliative care. Some people also assume my volunteer visits must be depressing because no one really wants to die. Wrong again. Some of my patients have stated they looked forward to death and gave reasons that had nothing to do with depression.

People have complex attitudes about death, dying, and ethical considerations. A Massive Open Online Course (MOOC) titled “Dying2Learn” provided an opportunity for researchers to explore societal and personal attitudes about wishes and beliefs regarding death and dying. Among research results highlighted were desires of patients to exercise choice and control in relation to dying. Some individuals wanted control while preferring not to know that they were dying. Others wanted to know as much as possible and still be more in control. Even after legal matters related to death were in order, some patients had concerns that others might not consider important, but the element of control still mattered.

All this talk about control reminded me of my hospice patient named Rose. Are you ready to die? Rose was. This is what she said to me about her upcoming death that clearly indicated her need for control:

She began by asking me, “How old did you tell me I was?”

I responded, “You’re ninety-nine. You’ll be one hundred years old on your next birthday.”

“One hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did because she felt she was in control.

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

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

"Missing" - An Older Adult, Loneliness Poem

"She waited, grasping like a New Year's resolution..."

 Many older adults rarely enjoy visitors they seldom see during most of the year. Whether at home or in institutions, loneliness can be both difficult and dangerous for their overall health. Too many of them endure the negative impact of loneliness daily.

“Missing” is one of sixteen original poems at the end of each chapter in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. A hospice volunteer, I wrote it after witnessing the sadness of lonely nursing home residents who were missing the missing. They coped with ongoing loneliness that could easily have been avoided with gifts of time. But some relatives and friends kept putting off visiting them until it was too late. Consider making every effort to visit those who are ill or alone. Don’t sentence them to another year of missing you.

Missing

She waited,
hoping her years of caring
endured in grown-up minds,
rested in distant hearts,
conveyed how much she missed them.

She waited,
living real-time movies
of restless nights, anxious days
with inhaled hopes of fellowship,
exhaled sighs of deep despair.

She waited,
wishing nostalgic winds
flowed through cotton curtains,
brought relatives and friends
she cherished through the years.

She waited,
grasping like a New Year's resolution,
like a second suspended in time
until her clock stopped ticking
for visitors who never came.

© 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, Frances Shani Parker's Website

Hospice Volunteer Meets Patient Living With Dementia

                                                   Frances Shani Parker

"That's Henrietta sitting by herself at the table," the nurse said to me. I followed her finger to a caramel-colored woman who sat humming. She had just finished eating and still hadn't wiped her mouth. A light coating of chicken grease looked like high-priced lip gloss when I walked closer to her.

Henrietta was going to be my new hospice patient, my first at this particular nursing home. Later, she would become my first patient whose health improved so much she was discharged from hospice care. For now, she knew nothing about me, including the fact that I was coming that day to serve as her hospice volunteer. I only knew she was seventy-nine and declining mentally with dementia. I pulled up a chair next to her and said, "Hi, Henrietta. I'm Frances Shani Parker.”

Looking me straight in the eyes like she'd known me all her life, she responded, "Girl, I know who you are, long as we've been friends. I've been waiting for you all day. I kept wondering when you were coming. I hoped you hadn't forgotten me, and here you are. What took you so long to get here?"

"Well, actually I got lost," I stammered, processing these new details concerning my whereabouts.

"Shucks, I get lost all the time. When you get lost, go to the lady at that desk over there. She'll tell you where you are. She'll tell you where you want to go. She knows everything. I'm surprised you didn't go to her before. We all do. How about some dinner? The chicken is something else, nice and tasty, just the way I like it. And I ought to know because I just had a wing that almost made me fly," she laughed.

"No, thanks. I'm not too hungry now. I'll eat when I go home. Some leftovers are waiting for me. I just came to visit you. I want to know if it will be okay with you if I come see you every week."

"Okay with me? Of course, it's okay. Look at all the years you've been coming to see me. If you stopped coming, I'd be wondering where you were just like I did today. So much is on the news, I'd be worried something happened to you. Keep on coming. I don't ever want you to stop."

"I'm looking forward to seeing you, Henrietta. We can talk together, and I can take you on wheelchair rides when I come. We'll get to know each other better. That is, better than we already know each other," I added, remembering our extensive "history."

"Sounds good to me. It's been working for us a long time. I think what you need to do now is eat something. You must be hungry after being lost all that time. Call the waitress over here and order some food. Don't worry about the money. Just put it on my tab. They know me at this restaurant. I eat here a lot."

So, this was Henrietta, an interesting oasis of serendipity. What would the future hold for us as patient and volunteer? I smiled to myself, buckled my mental seat belt, and prepared for another intriguing ride.

© Frances Shani Parker

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at booksellers such as Amazon.com. Visit Frances Shani Parker's Website.

Nursing Home Mealtimes With Dementia

"Food? What food?"

At nursing home mealtimes, I served as a hospice volunteer at several Detroit, Michigan nursing homes for many years. Hospice residents are predicted to have up to six months to live, but may exceed that time. I had contact often with residents who were assigned or not assigned to me. My assigned hospice residents were always my primary concern. Most of them shared rooms with up to three people. 

In the mealtime stories below, I shared a table with six other residents. Several were living with some form of dementia. Due to limited staff, I knew I would have to supervise, encourage, and generally keep an eye on everybody at the table. A Detroit, Michigan public school principal, I was used to multi-task management and didn’t mind assisting them weekly after school at all. These stories from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes describe typical mealtime experiences with residents living with dementia:

I continued talking to Naomi, my assigned hospice patient, and assisting her while monitoring others at the table. I noticed that Petra had not touched any of her food. Petra was not a very independent eater, but I knew she was physically capable of feeding herself by any means necessary.

“Petra, your food is just sitting there getting cold. You have a whole tray of delicious things to eat. You should eat some and see how good it is. You’re a good eater. Eat your food.”

“Food? What food? I don’t have none.”

“The food on this tray is all for you, Petra. This is your food tray right in front of you. Watch me point to each item. You have coffee, juice, milk, mashed potatoes, fish, broccoli, bread, and fruit. That’s your name spelled P-e-t-r-a.”

“That’s not my name. My name is Petra. That’s somebody else’s name. That’s not my name. I know my name.”

“Well, that is still your food on the tray. You should eat before it gets cold. Go ahead and eat. Give it a try.”

“Eat? Eat what?”

“Your food, Petra, your fish, potatoes, and everything else.”

“Fish? What fish? I don’t have none. Do you see a fish here? I don’t see a fish. I don’t have none.” 

From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Fortunately, she was sitting next to me. I gave her a taste of the fish first because I knew she liked it. Then I placed her fork in her hand and started her off eating. I did this in steps by steering her hand and giving her directions on putting food into her mouth, chewing, and swallowing. Residents with dementia often needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once I started her off. But without any help getting started, she would sit and look at the food she said was not there. My other hand continued to assist Naomi, the resident assigned to me. My eyes monitored everybody at the table.

“Don’t do that! Leave my food alone! Get your nasty hands off my plate! Help! Can somebody help me?” screamed a resident at our table as if she were under attack. All the nurse aides were occupied feeding residents at other tables and experiencing their own mealtime problems. As the  unofficial table captain, I told Roscoe sternly to leave Charlena’s food alone. He gave me a confused look, pretended he didn’t know what I was talking about, but betrayed himself with a silly grin he thought I didn’t see. I leaned across the table and directed his attention to his own plate by putting his spoon in his food. He picked up his spoon and started eating again. Then I reassured Charlena that everything was okay, and she could finish eating. Charlena smiled with an air of triumph. Roscoe was in trouble, and she enjoyed knowing she helped to get him there.

Rita had been watching me help Naomi and Petra eat. Imitating me, she was attempting to feed George, but with her own used utensils. George had his mouth open obligingly to help. I interceded before any damage was done. By this time, several residents had spilled food on the table or the floor and had food stains on their bibs. Petra had to be restarted twice to eat the food she insisted she had never received. I had stood to lean across the table twice to settle other table disputes involving food and different residents.

Naomi ate quietly during all the interruptions. I had been giving her ongoing praise on how well she was doing. I also praised others at the table when they did well. They savored the attention, and Naomi wasn’t the least bit jealous. She had already told them that I was her guest and even offered me food which I declined. I had not gone there to eat and could not think about eating if I had. 

When one resident was praised, another would often say, “Look at me! I’m eating, too!” This reminded me of students at my PK-eighth grade school. They said the same thing when someone else was praised. I laughed, thinking the world was a universal classroom. Maybe the stars in the sky were created to be placed on foreheads of people around the world when they did something praiseworthy.

© Frances Shani Parker, Author, Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker, Author

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

Caregiver Abuse and Solutions December 2022

It is often said that everyone has a breaking point. What about caregivers working under very stressful conditions? What about caregivers who believe that, under no circumstances, would they ever commit an abusive act against people they have loved dearly their entire lives. Are they even aware that abuse or neglect of an elderly person can be a criminal offense, a basis for legal litigation, and not just a family problem?

The tremendous challenges of caregiving can be underestimated when the commitment is made willingly to accept the position. Cases of older adults being abused physically, psychologically, sexually, and financially by caregivers, some whom they loved and trusted, continue through the years. Yes, abuse takes place in institutions, but abuse also occurs in shared living spaces with caregivers who are loved ones and relatives. 

Caregivers must always be consciously aware of their own needs and limitations as they go about the business of taking care of vulnerable people who depend on them. Respite time away from their patients can play a significant role in keeping them balanced, revitalized, healthy and relieved from excessive stress. This is time when they can reflect on and fulfill their own needs in ways they enjoy, socialize with others, explore resources and people who can support them on their caregiving journey. 

You may report suspected elder or vulnerable adult abuse, neglect, or exploitation to Adult Protective Services by calling 855-444-3911. To report abuse in a nursing facility, call the Attorney General's Health Care Fraud Division on their statewide hotline, 800-24-ABUSE (800-242-2873).

Notify the Michigan Department of Health & Human Services (MDHHS) Adult Protective Services at 855-444-3911, if you suspect elder or vulnerable adult abuse, neglect, or exploitation.

The National Center on Eldercare Abuse (https://ncea.acl.gov/) or NCEA provides the latest information regarding research, training, best practices, news and resources on elder abuse, neglect, and exploitation to professionals and the public. The NCEA is a resource for information on abuse, neglect, and exploitation of older people. All of these organizations can assist people in getting help.

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.

Dementia, Hospice, Ancestor Poem

                                     

                                          

Her name was Miss Loretta. A hospice volunteer, I admired her brown, wrinkled hands often when I visited her weekly at a Detroit, Michigan nursing home. During our conversations, her aged hands and soft whispers reflected happy highs and tragic lows of muddled memories from our shared history. Our common heritage included countless years when we did not know each other. But history bridged our communication beyond her debilitating dementia that intensified during our many meetings before she died. 

Recently, I thought about Miss Loretta when I discovered a website with photos featuring elderly hands. Immediately grabbing my attention were mesmerizing hands very similar to Miss Loretta's. I felt her presence reassuring me again in her own unique way through scattered recollections of historical backstories. I recalled a poem I had written years ago that was inspired by our special kinship. Miss Loretta's spirit continues to influence my life as I create my own wrinkled legacy.

The following poem is my special tribute to Miss Loretta and our awe-inspiring ancestors who endured the unendurable while creating pathways for future generations. Their helping hands and unwavering resilience gifted us with treasured testimonies about joy, pain, courage and survival beyond dementia and far deeper than words.

"Deeper Than Words" by Frances Shani Parker

The outside world arrives wearing my willing face. 

Toothless, your smile widens like a baby's hungry for attention.

Almost ninety-eight years old, your inner candle still glows.

A hospice volunteer, I lean closer, talk into your listening left ear.

"Today is Sunday, Miss Loretta." My news drifts away like smoke.

You stare at me through dying coals. Whatever I ask, you whisper, "Yes."

I stroke your age-softened hands while your hazed mind masters sleep.

Watching you, I dream generations of women black and strong,

each one a book of sustaining stories about joy, pain, courage, survival.

Within your warm, brown frame, spirits from our common history linger.

Aides say you have dementia, that you don't know a word I say.

Our language goes deeper than words. We speak to each other's souls.

Frances Shani Parker 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.

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.

Empathy in Healthcare

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 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.