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

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

Hospice Volunteer Training: End-of-Life Communication Issues

Sooner or later, hospice volunteers experience or observe communication concerns relating to patients or their families. In a research study by the Communications Department at the University of Utah, hospice volunteers reported that denial was the most common communication issue for patients, family members, and caregivers. The second most reported communication problems related to negative feelings and family conflicts. At personal levels, volunteers reported that their most common communication problems centered on interacting with patients who had diseases such as Alzheimer's or Parkinson's disease that impaired conversations. These results suggest that volunteer training programs should include more information to support volunteers in their communication efforts.

Personally, I enjoy coming up with ways to bridge gaps in communication. I never assume patients cannot hear me, unless they have been officially diagnosed as hearing impaired. I talk to them the way I would talk to hearing patients. I tell them what's going on at the nursing home and other news. Even when their eyes are closed, but I know they are awake, I tell them who else is in the room and say something positive about them to those present, so patients can feel included in the conversations.

I check their assignment forms and talk to their caregivers to find out what their backgrounds and interests are. This gives me more sources for topic ideas. If patients are able to leave the room, I take them on walks or wheelchair rides. I read to them, play music I think they will enjoy, touch them to reinforce my presence; I feed them, play games, sing, play the radio, and watch television with them, regularly making comments and always analyzing their body language to see if I'm making connections.

When I do a good job of this, I see signs that we are making progress. There may be smiles, alertness, something in their eyes that tells me our communication gaps are getting smaller, that we are forging relationships enhancing our lives. That's when the beauty of hospice volunteering sweeps me up like a great piece of music.

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

Children Talk About Grandparents and Dementia, Alzheimer's Disease (Video 6:30 mins.)

Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s (Ahlz-high-merz) disease is the leading cause. Most people who have the disease are over sixty-five, with eighty being the average age of diagnosis.

So often, we hear about responses of adults regarding parents with dementia. But what is dementia like through the eyes of grandchildren? Imagine their emotions when a loved one forgets their names and can’t remember the relationship they have. What about the hurt feelings children experience when an agitated grandparent with dementia strikes out at them verbally or physically and they’ve done nothing to cause this?

Dementia must be explained to children in age-appropriate ways that can support them in their adjustments to the dementia of a grandparent. Listening to children’s concerns and encouraging them to express them are important. Family discussions can be helpful for everyone.

Parents should be aware of changes in children’s behavior at home and school. Children need reassurances that they are not the cause of a grandparent’s mood swings, that they are still loved by the grandparent who has an illness that sometimes interferes with the expression of that love. They should be reminded of the many good times in the past that they shared with a grandparent.

In this video, children talk about their experiences of having grandparents with dementia.

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

Alzheimer's Disease: African American and Hispanic Survey Results

“The older I get, the less I remember.

She’s getting old and forgetful.

His mind goes blank since he turned seventy.

Do you hear comments like this a lot from senior citizens? I do. Many people equate old age with loss of memory. But a recent scientific survey concluded that almost 70% of African Americans and Hispanic families who have relatives with Alzheimer's disease dismiss their symptoms as part of aging, compared with about half of non-Hispanic whites.

This research information resulted from a survey released by the Alzheimer’s Foundation of America. The telephone survey included 655 adults. Another conclusion of the survey is that African Americans and Hispanics were less likely than non-Hispanic whites to place relatives with Alzheimer's disease in nursing homes or assisted living facilities and more likely to rely on support groups. I know these choices are often based on cultural reasons. No doubt, hospice placement also would have ranked low if it had been surveyed.

These survey results indicate the need for more information outreach about Alzheimer’s disease, particularly among communities of color. The results partially explain why African Americans and Hispanics are often diagnosed late. More corrective measures should take place to prevent further racial-ethnic health disparities regarding Alzheimer’s disease.

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

Alzheimer's Association Safe Return Program

I have had many hospice patients with Alzheimer’s disease or other forms of dementia. One thing I have learned is that I never know the boundaries of what they will or won’t do. So I’m always surprised when I meet caregivers who think they can accurately predict the behavior of their relatives who have dementia.

When a disease is progressive, it is moving at an unpredictable pace. A friend of mine left her husband in the car, while she ran into a store to make a quick purchase. Upon returning, she became frantic when she discovered the car was gone. Her husband had noticed the car keys, started the car and driven off, something he had not done in years, something she figured he would no longer do. Fortunately, the police found her husband several blocks away sitting in the parked car. But the story could have had a tragic ending.

The Alzheimer's Association Safe Return Program has been around for years, but I keep finding people who have never heard of it. This program provides safeguards, at a reasonable cost, for incidents, such as the one where my friend’s husband drove off. These safeguards include a national information and photo database that operates 24 hours a day, seven days a week, with a toll-free crisis line. Partnerships with law enforcement and other emergency responder agencies increase its effectiveness.

Identification products that have a toll-free number are provided. Products include necklaces, bracelets, wallets and clothing labels. When the phone number is called about a missing person, a caregiver is contacted through the Safe Return database. If necessary, the missing person’s photograph and information will be faxed to local law enforcement agencies. Nursing home patients, who might wander or get lost on trips, could also benefit from these products. One product I particularly like is worn by the caregiver to alert others that he or she is responsible for someone with dementia. If the caregiver is hurt, etc., others can help to get supervision for the patient. For more information, visit the Alzheimer's Association Web site. If you or anyone you know has used the services of this program, your comments are welcome.

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

Hospice Volunteer Cemetery Story

This 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 patient assigned to me after years of 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 and 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, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Hospice and Nursing Homes Blog