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

Dementia Mourning: Death of Spouse, Children (Research, Hospice Story)

Whether they live at home or in long-term care, people with dementia can have the experience of losing a loved one through death. The deceased is often a spouse. Unfortunately, little is known about widows and widowers with dementia as they may find it hard to explain their perceptions and feelings to others accurately because of cognitive impairment. That is why this particular research study was done.

Seven family caregivers and six professional caregivers from daycare centers were interviewed. An analysis of their responses was used to identify mourning behaviors of people with dementia. The following revelations resulted:

1) In the mourning process of people with dementia, different behaviors were found according to dementia stages and different circumstances.

2) People with dementia could remember their spouse's death. It took one year to be able to perceive their spouse's death and more time to store it. They did not always discern a spouse's death throughout the process.

3) People with dementia followed a different mourning process from conventional ones.

In the care of widows and widowers with dementia it is crucial to adjust circumstances to allow people with dementia to guess reality. Further studies are needed to clarify differences between the mourning process of people with dementia and that of intact older people without dementia.

Healthcare workers and volunteers are often in positions where we can provide grief support for patients. Residents in long-term care are often told about a death, even though they may be confused about who died. They may need reassurances that they will still have others to care for them. This true story shares how Mamie, one of my hospice patients who had dementia, dealt with her grief in an interesting manner.

“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.”

“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 bizarre ranting of a woman with dementia. But, if you really listen with your heart, you’ll hear the magnificent empowerment in her words.

Story 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.

Hospice and Nursing Homes Blog

Volunteer, Patient First Meeting

Pointing her out to me, the nurse aide said, "That's Henrietta sitting by herself at the table." 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 fascinating ride.

© Frances Shani Parker (excerpt from my book 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

Volunteer Meets Nursing Home Patient With Dementia, Alzheimer's

Pointing her out to me, the nurse aide said, "That's Henrietta sitting by herself at the table." 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.

Hospice and Nursing Homes Blog

Grief Responses of Older Adults With Dementia, Alzheimer’s (Research, Hospice Story)

Dementia can have a profound effect on how someone responds to the death of a loved one. Each person with dementia is unique with a response cloaked in a lack of memory layer different from someone without dementia.

Healthcare workers in long-term care often have residents whose primary loved ones have died. Family members and others also experience this as caregivers. The following common questions are of concern to many people regarding death of a loved one of someone with dementia:

1)   Should the person with dementia be told about the death? (In most cases they should be told, but preparations should be made for the kind of responses they may have after receiving that information.)

2)   How should the person be told?

3)   How will the person’s response impact the family?

Grief response researchers explored these questions in two focus groups. One group consisted of family members, and the other group consisted of an interdisciplinary group of long-term care healthcare workers. These are the three resident response patterns that became evident:

1)   Self-threat (concern about who will take care of them)

2)   Substitution (confusion over who actually died)

3)   Metaphone (substitution of loss of dead person with an object or unrelated item)

This true story from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains how one of my hospice patients who had dementia dealt with her grief during a conversation we had:

“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.”

“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 woman with dementia. 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 is available in paperback and e-book editions in America and other countries at booksellers such as Amazon.com.

Hospice and Nursing Homes Blog

Dementia Patients Eating (Alzheimer’s Research, Hospice Volunteer Story)

“Food? What food?”

As a hospice volunteer in Detroit nursing homes, I had contact often with residents not assigned to me. My hospice patients were always my primary concern, but most of them shared rooms with up to three other people. At mealtimes, my patient and I shared a table with six other residents. In the excerpt below, I am the only one at the dinner table without dementia. Due to limited staff, I knew I would have to supervise, encourage, and generally keep an eye on everybody at the table. A public school principal, I was used to multi-task management and didn’t mind assisting them at all.

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

I continued talking to Naomi (my hospice patient) and assisting her while monitoring others at the table. I noticed that Petra had not touched anything. 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.” 
(Note: Nowadays, I would omit some of the above conversation to keep her calmer and more focused on eating.)

From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Luckily, today she was sitting next to me. I gave her a taste of the fish 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. Patients with dementia needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once somebody 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.

“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. I was resigned to be 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 smirk 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 relished knowing she helped to get him there.

Rita had been watching me help Naomi and Petra eat. Now, she was attempting to feed George, but with her own used utensils. George had his mouth open obligingly, anything to help the cause. 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’d never received. I had stood to lean across the table two more times to settle other table disputes involving food and different residents.

Naomi ate right along 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 the others that I was her guest and even offered me food, which I declined. I hadn’t gone there to eat and couldn’t even 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 school who 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 billions of people’s foreheads when they did something praiseworthy.

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

My experience above is consistent with research findings on factors affecting independent eating among elderly patients with Alzheimer’s disease. Published in Geriatrics and Gerontology International, this Alzheimer's research study on independent eating is the first to generate objective data showing that difficulty in beginning a meal is a factor that hinders feeding independence by older adults with Alzheimer’s disease. The study also concludes that eliminating environmental interference factors and providing assistance promoting beginning a meal are necessary to assist older adults with Alzheimer’s disease.

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

Becoming a Hospice Volunteer Against My Will

People often ask me how I became a hospice volunteer. For the record, nobody is more surprised than I am. You know how some people can walk into a patient’s room, plump pillows, and make all the right comments? Years ago, I was not that person. I never really felt comfortable visiting sick people. Working in the healthcare arena seemed depressing. Besides, I had made a conscious decision to become an educator when I was in fifth grade. Unlike many who have chosen hospice volunteering, my motivation had no connection with professional choice or with anyone close to me dying, although I had experienced that several times.

So, how did I get into this situation? I was principal of an urban public school located in an area of high poverty, crime, drugs, prostitution, and homelessness. Major problems of others clamored for space on my always-crowded plate. Over a three-year period, I was thrust into life-threatening predicaments of two men I didn’t know well who were suffering with AIDS, an infectious disease of the immune system caused by the HIV virus. They were my introduction to serious caregiving of the terminally ill.

The first man, who was in total denial about his condition, also had dementia that included daily harassment by invisible people. After he died, I sighed, thinking that scenario would never happen to me again. A year later, the second man showed up. Both men lacked strong support systems, which were crucial during the 1990’s when infected people were ostracized and dying quickly. My mother warned me to stay away from them or I might “catch” it.

But I didn’t stay away. I served as these men’s hospice volunteer without even realizing I was one. It just made good sense, and we all benefited from the experience. I discovered significant layers of myself that I never knew. After my involvement with the men ended, I ran into a friend who said she was performing service as a hospice volunteer. Her description of what she did sounded very familiar. A few weeks later, I read a newspaper ad about hospice volunteer training classes. I decided to get certified to do what I had already been doing and become even more prepared if somebody else ill showed up.

As an official hospice volunteer for many years, I have served numerous terminally ill patients who  showed up. In addition, I have been writing Hospice and Nursing Homes Blog for several years and have recorded my hospice volunteer experiences and insights in a published book titled Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. I enjoy consulting with groups, advocating for patients, and educating caregivers, healthcare workers, policy makers, and the general public.

End-of-life care for millions of aging baby boomers continues to challenge our healthcare system and society. More people are needed to dig into wells of themselves and provide solutions to these growing concerns. Consider becoming a hospice volunteer. Various assignments are available to accommodate your personal comfort zone. Your service as a hospice volunteer can be a win-win experience, even if you didn’t plan to be one.

© Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

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

Hospice and Nursing Homes Blog

Alzheimer’s Dementia Hospice Story: Coping With Grief

“She’ll rise out of her grave…”

This true story about a conversation with my hospice patient is one of many in my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

When Mamie Wilson became my hospice patient, she had several unusual qualities that made me wonder. At sixty-five with Alzheimer’s dementia, she was the youngest patient assigned to me after years of hospice volunteering. 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, 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.”

“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

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 several other countries at online and offline booksellers.

Hospice and Nursing Homes Blog