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.

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.

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

Hospice Volunteer Success Secrets

Hospice Volunteer Success Secrets by Frances Shani Parker, Author of 

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 life 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, discussion groups, workshops, and conferences 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

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

Dead Right Life Journey in 10 Steps

Becoming dead right is a journey that begins when your life starts. 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. Accepting the certainty of death can be so much easier when it’s approached like any other important life event. By following a workable plan while living, comforting closure can be achieved when that ultimate destination is reached. Consider these 10 steps featuring scenic routes on your dead right journey:

10 Steps to Becoming Dead Right

1. Accept death as part of life.

Death will come to everyone. Empower yourself by dealing with this reality.

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 win-win 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, 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.
Hospice and Nursing Homes Blog

Win-Win Hospice Volunteering

By Frances Shani Parker

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 improvement. 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 life from their perspectives. Focus on advocacy for improving their quality of living.

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 own 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, author of 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

Are You Ready to Die? Bella Was.

Are you ready to die? Many people assume that nobody really wants to die, but I have known several non-suicidal hospice patients who looked forward to death. Bella comes to mind first. She said she was ready to go to heaven, and, at a personal level, she was. But Bella kept pushing death back because she wanted her death ritual and other plans to be just right, the way she wanted them.

“I won’t be here when you come next week. I’ll be in heaven. You can call ahead if you want to be sure I’m not here. That way you won’t make a trip for nothing,” she warned me, her weekly hospice volunteer.

“Thanks for telling me, Bella. I’ll just come anyway and see for myself,” I responded like it was the most normal thing in the world. In recent weeks, whenever I left from visiting her, Bella said it was the last time I would see her. She said she would be dead before I returned the following week.

When I returned and she was still alive, I’d say, “Well, I guess you changed your mind about dying this week.” Bella always had a good excuse. A few times, she didn’t want to miss some festive activity like the annual Christmas party at the nursing home. Most times, it was for practical reasons like getting funeral, burial, and other after-death plans in order with the help of her family. She wanted her children to clean her house thoroughly, so relatives and friends could go there to fellowship after her funeral. Cleaning entailed sorting and packing clothes for charity. There were several other tasks beyond actual dust removal. Her various excuses for not dying continued for months while she finalized arrangements from her nursing home room.

Bella even invited me to join her on her after-death journey. She said it might be more fun if we went to heaven together. I declined this invitation by explaining it just wasn’t my time. Besides, she already had a bunch of people there waiting for her.

One day, Bella’s warning came true. I received the hospice phone call saying she had died. I smiled to myself and said, “Good for you, Bella! You finally did it!"

(Story above is excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.)

What about you? Are you ready to die? Do you think about what death really means to you and how you want your wishes implemented? Have you had death conversations that will help you and others prepare for death physically, financially, and regarding your property? Like Bella, is your “house” in order?

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

10 Life Steps to Good Death

1. Accept death as part of life.

Death will come when it comes, no matter how often you avoid the topic or how forcefully technology wrestles it to the ground.

2. Listen to the universe.

Some call it the universe, while many use Higher Power, God, 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 you anticipate them.

4. Live a healthy lifestyle.

Practice habits of good health. Commit to including them in your daily living.

5. Be informed and proactive.

Keep abreast of what’s going on. When circumstances arise that can benefit from your knowledge, apply what you know.

6. Do your best.

You can’t solve every problem or be everything to everybody. Just do all 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 healthcare, financial, and property death decisions in writing.

Fulfillment of your end-of-life wishes will often depend on what you discuss and record now.

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.

Copyright © 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.

Hospice and Nursing Homes Blog

Hospice Patient Discharge (Research, Long-Term Care Story)

Hospice does not speed up death. If two terminally ill patients had identical issues, the one in hospice care would probably live longer. During my years of hospice volunteering in Detroit, Michigan nursing homes, I rarely had patients leave hospice alive.

Who leaves hospice alive? Discharges can occur when patients decide to resume curative care, when their conditions improve beyond hospice guidelines, or when hospices inappropriately use live discharge to avoid costly hospitalizations. A national study of live discharges from hospice stated that approximately 1 in 5 hospice patients is discharged alive with variation by hospice programs and by geographic regions. Connecticut has the lowest rate, and Mississippi has the highest. Not-for-profit hospices and older hospices have lower rates of live discharge.

From the perspectives of patients and family members, what are the experiences of adults discharged from hospice programs due to decertification related to ineligibility or extended prognosis? A hospice discharge research study reported that two primary themes emerged. One theme was suffering, and the other theme was the paradox of hospice discharge. Subthemes included abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, bearing exhaustive witness, having and needing support, mixed feelings, not dying fast enough, and hospice equals life. Clearly, more study about the hospice discharge experience is needed for healthcare providers to offer appropriate support to patients and families.

People are often surprised when I speak about patients leaving hospice alive, especially when I tell them Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her fourth roommate was actually an imaginary admirer named Robert, whom she loved like the devil loves holy water. One day, she surprised me with talk about leaving hospice care and the nursing home:

Raynell requested my help by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

I responded, “Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert (annoying imaginary boyfriend) had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation.  It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she never said Robert was hiding under her bed, and she needed me to chastise him for her. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he was left.

© Excerpt above from Becoming Dead Right

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