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 End-of-Life Vigil (Video 1:58)

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. The importance of being with a patient who doesn’t want to die alone is the reason many hospice programs are providing specialized volunteer vigil training. When it comes to patients, it is more about the volunteer being there than what the volunteer actually does. The patient senses and appreciates the volunteer’s presence. During vigil training, a volunteer is taught how to provide bedside support during the final days and hours of a patient’s life. Assistance for families is included. This can be an overwhelming time for patients and their families because so much of the experience is unchartered territory.

At some facilities, staff members also volunteer for vigil assignments. Vigils, which are based on a patient’s wishes, can include talking, praying, inspirational reading, playing music, performing rituals, touching and, of course, sharing silence. Vigils may last hours or days and can be done in shifts. Reflecting the hospice philosophy, volunteer vigils help provide the patient with a more peaceful end-of-life experience.

In this video, Doris, a hospice volunteer at the Hospice of Western Reserve shares her hospice experiences that include end-of-life vigiling with patients actively dying:

Many healthcare staff members who work with dying patients will tell you they have had patients share stories about seeing dead people, ghosts, spirits they recognize, and angels. View this post for my personal story and an informative video: https://www.linkedin.com/pulse/end-of-life-seeing-dead-people-angels-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 at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Volunteers for Pet Owners: Pet Peace of Mind (Video 8:06)

What would you do if you were dying with no one to care for your pet? What would happen to your pet if you actually died? If you had no reliable support system in place, your pet could end up at an animal control shelter where it might not be adopted within a certain time frame and could be euthanized. A national program for non-profit hospices, Pet Peace of Mind provides help to hospice patients experiencing these problems.  Funded by Banfield Charitable Trust, this program works with hospices in providing temporary and permanent care for pets of hospice patients. Care includes training materials, routine pet care, and tools to facilitate adoption.

For many people, their pets are their family, sometimes their only family.  They love and worry about their pets in the same ways others express concern about their children. When hospice patients are too ill to care for pets or need others to take full ownership of pets after they die, knowing a hospice volunteer will provide that care can be the difference between having a death journey with peace of mind or having one feeling depressed and anxious about the pet’s well-being. 

This video titled Pet Peace of Mind from Banfield Charitable Trust shows the importance of having a pet adoption program available for hospice patients.

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

Want Hospice Care? Refer Yourself. (Video 3:11)

How do you get hospice care? The usual response to this question is that you have to be referred, and doctors have to sign off to make it official. Many people assume this means a family member or a healthcare professional must initiate the referral procedure. Wrong. You can refer yourself.

Maria Hodges suffered for many years with emphysema. Eventually, her body deteriorated to a point where she knew she was dying and couldn’t handle it alone. She went to the Hospice & Palliative CareCenter in North Carolina and referred herself. Her biggest surprise was her discovery that they would treat her in her own home. This is Maria’s story about “the hospice touch” that made her feel cared for and safe after she referred herself:

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

Hospice Volunteers Share Experiences (Hospice Poem, Video 3:25)

Each hospice volunteer has a unique story to tell.  This is my story poem about my hospice volunteer experiences in Detroit nursing homes:

Reflections of a Hospice Volunteer

By Frances Shani Parker 

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

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 at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Medical Student Training: Hospice Patients and Staff (Research)

I was sitting on a hospital examining table while contemplating when I could get dressed and escape. That’s when a doctor walked in with ten medical students in tow, all eager to hear about this new exhibit—me.  A former school principal, I totally support minds being terrible things to waste and nobody being left behind. But having a group of strangers walk in unannounced under these circumstances was uncomfortable. And I wasn’t even a hospice patient.

How do hospice patients feel about being participants in the training of medical students? Is it annoying being scrutinized by groups of students while patients struggle with their own health issues? What about the healthcare staff? Do they welcome opportunities to participate in educating others through patient contact, or do they view these experiences as inconvenient for them and intrusive to the terminally ill?

Hospice patients and staff were interviewed regarding their views on involvement in the training of medical students. The research results indicate that hospice patients are “strongly positive” about meeting medical students. Staff members carefully select patients based on specific issues. When done appropriately, training medical students with hospice patients and staff can be a win-win experience for everyone. 

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Who Wants a Hospice-Palliative Care Volunteer?

Everybody wants a hospice-palliative care volunteer, right? Wrong. I never assumed that patients would always be glad to have me as their hospice volunteer, and it’s a good thing I didn’t. One day I met a patient who made it clear I wasn’t wanted. My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains what happened. This is how the initial conversation went with a hospice patient named Lelia:

“When I first met her, she was sitting alone in a dimly lit room she shared with three other women. Her blouse was unbuttoned, exposing one sagging brown breast and a wormlike scar where her other breast had been removed. Depression embraced her like a close friend. A wary look in her eyes told me she had no place for a hospice volunteer on her agenda.

“What’s that, you say you a hospice volunteer, and you want to come see me every week? No, I don’t need to see you. I have enough visitors,” Lelia complained shortly after I arrived. Her tone reeked with annoyance at my intrusive presence in her gated world.

“Lelia, I came by to see you today because I hoped we could get to know each other better. I was thinking that I might be able to help you in some way, maybe with a problem or something.”

“No, I got enough help. Like I said, I don’t need to see you. I don’t need to see nobody. I just want to be left alone.”

© Frances Shani Parker

So much for making me feel welcomed. Fortunately, I was able to win Lelia over and have a very interesting relationship with her. Her story is one of my favorites.

What does research say about dying people wanting hospice-palliative care volunteers? According to the “The American Journal of Hospice Palliative Care" research at Mount Allison University yielded the following results using 100 adults:

Participants were asked to imagine they were terminally ill and told about services volunteers could provide. Finally, they were asked if they would want a volunteer and why. Eighty-nine participants wanted a volunteer, mostly for general support and lack of nearby family. What about the other thirty-five? Some sounded just like my patient Lelia by saying they didn’t need help. Other reasons included being private people.

In the total group, sixty-five participants were aware of the volunteer program. Among those who were not aware, 89% expected their family doctor to inform them of the program. These results indicate a need for more patient information regarding the availability of hospice-palliative care volunteers.

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