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account of Frances Shani Parker's hospice volunteer insights and experiences in Detroit,
Michigan nursing homes. This universal book includes stories, general information, and
account of Frances Shani Parker's hospice volunteer insights and experiences in Detroit,
Michigan nursing homes. This universal book includes stories, general information, and
original poems that explore hospice care, nursing homes, caregiving, dementia, death
preparations, and bereavement. Strategies for improving healthcare and nursing homes
are examined. School-nursing home partnerships are covered. The often-missing voices
of people of color are included.
Praise for Becoming Dead Right
"A school principal and hospice volunteer, Frances Shani Parker relates her experiences with
dying people in nursing homes. The second part of her book is about what we as individuals
and as a society must do to improve things for those who are dying. I particularly
enjoyed the guided tour, conducted from a wheelchair, of Baby Boomer 'Haven'."
-- Dr. Roger Woodruff, Director of Palliative Care, International Association for Hospice
and Palliative Care, Austin Health, Melbourne, Australia
"The writing is eloquent and powerful, and the stories are instructive and lasting. After
finishing this book, I wanted to do more for other individuals who are dying, for as
Ms. Parker so clearly imparts, the dying teach us so much about living well."
-- Dr. Peter A. Lichtenberg, Director, Institute of Gerontology, Wayne State University, Detroit, Michigan
"This book is filled with poetry, stories, wisdom and common sense that can help boomers, students, caregivers and policy makers understand their own aging and realize that our
society can--and should--make important changes that can ensure safe, dignified, individualized
care at the end of our lives."
-- Alice Hedt, Executive Director, National Citizens Coalition for Nursing Home Reform
Learn more at www.BecomingDeadRight.com
From the "Aging With Grace" Series at Loving Healing Press (www.LovingHealing.com)
MED042000 Medical : Terminal Care
FAM017000 Family & Relationships : Eldercare
SOC036000 Social Science : Death & Dying
They watch me all the time, even when I use the bathroom," Jake lamented almost childlike. "They get mad when I don't leave the television on the cartoon channel. I can't sleep at night."
"Is that still going on? Are you still having those same problems? I thought things were getting better for you. What about your friend? Did you visit him to get your mind off this like we discussed a few weeks ago?" I asked.
"Yeah, I went to see him over the weekend, and they came, too," he responded wearily. "After I went inside, they made a big ruckus on the porch. It sounded like a whole bunch of them jumping, screaming, and laughing, just to get me all worked up. I kept running to the front door, opening it to catch them, but they would disappear too fast. My friend didn't understand what was going on. I tried my best to explain it to him. Finally, he told me I had to leave. I got the feeling he meant for good. What do I do now?"
Jake was a tall, brown, wiry man I knew from the neighborhood where I worked. He was well mannered and concerned about the community. Over a period of time, however, our infrequent conversations slowly began to revolve around his personal troubles. While I empathized with his sincere pleas for help, his stories became more bizarre each time we talked. We had discussed his unseen stalkers on several occasions. They chastised him about anything he said or did wrong, even small things like forgetting to hang up his washcloth after taking a shower, or leaving a light on when he left a room.
In the mornings, they stood outside his front door and hollered out what he was eating for breakfast. A mocking tone of laughter always accompanied their loud recitation of the breakfast menu. Jake waited for them to start hollering. Then he would jump up, run to the door, and swing it open to a nothingness that shocked him. He tried to trick them one day by eating salad, but they still knew he was eating salad and harassed him more for trying to fool them.
Most of the time, they stayed home to watch television cartoons when he left to go to work or go on errands. Occasionally, they followed him and sometimes spent the day at his gas station job. They insisted that all his work be done correctly. If Jake didn't do something right, they criticized him until he started over and performed successfully, even if it took many attempts on his part. At night, they made scratching noises on the ceiling above his bed to keep him awake. Sometimes they stomped on the back porch or beat on the walls, just to be mean.
These harassing hunters watched him through closed doors, from every corner of every room, on the street, in stores, at the bank, everywhere. There was no escape, no exit from this hell's ghetto. Although they despised him, they had no plans to leave anytime soon. Jake was a desperate man grasping for control of his life. A drowning man, he kept grabbing the non-existent leaf. Although he said he was seeing a doctor, he insisted no one understood him like I did. The truth was I only understood he was a good guy with some dangerous demons.
For several months, I had watched Jake deteriorate from a confident conversationalist into a paranoid caricature of himself. Watching him wrestle with terror fascinated and frustrated me. When he showed up one day with Noxzema dotted all over his upper body, I felt sure my suspicions were correct about his having AIDS (Acquired Immune Deficiency Syndrome). I had read how AIDS-related dementia could affect a person's mind with delusional thoughts. A closer look at his skin revealed scattered clusters of bumps like patches of ant bites. Anybody could see he needed medical treatment. We had discussed my concerns before, but he bristled with denial whenever I suggested he might have AIDS. Standing there looking like polka-dot confusion, he insisted his doctor said he only had a rash that would go away soon. He said he felt fine, but he surely didn't look like it.
I was a Detroit public school principal working in a low-income, housing-project neighborhood that had one of the highest HIV/AIDS, drug abuse, and prostitution rates in Michigan. The many challenges inherent in this position were what attracted me to the job and location. Although I loved the school and community, the last thing I needed was another problem to solve. I certainly didn't think talking with Jake in a friendly manner would escalate into life-threatening revelations. But Jake was in no mental condition to save himself. Ongoing chaos had become normal to him. Whether I wanted it or not, his agony, with all its desperate fury, had landed on my desk.
I asked him for his phone number, so I could explain my concerns to his family and encourage them to get him medical treatment. During my call to them, they told me they knew about his problems. They were tired of dealing with him and his fantasies. His brother added that I should quit wasting my time with Jake's attempts to get attention. Jake had clearly been written off, in terms of their support for his condition. He had told me I would get that response. He said he had heard it all before, that they never took him seriously. In his starring role in this real-time horror movie, he continued to ride his catastrophic car of fear and helplessness. Somebody needed to steer this runaway ride. As much as I dreaded the task, I seemed destined to be that somebody.
Getting medical treatment for Jake became another item on my long list of priorities. I couldn't trust him to handle the escalating pandemonium anymore. At the same time, I knew I wouldn't ignore him. Convincing him to go with me and the invisible stalkers to see a doctor wasn't easy. Everybody had jam-packed schedules, including me. However, sleep deprivation was smothering Jake with exhaustion. Although he denied the seriousness of his situation, a part of him welcomed the possibility of relief. Deep down inside him, memories of peace, privacy, and ordinary days, days that most people take for granted, struggled to maintain their presence.
Jake finally agreed that it made sense for all of us to go together. Maybe the stalkers were curious about this new twist in his routine. Perhaps he was tired of feeling beaten up all the time. Whatever the motivation was, an unknown number of passengers and I piled into my compact car. Jake sat in front next to me. Looking at him and toward the back seat, I told everybody to buckle up and waited while they did.
A few weeks later, my visits with Jake took place in a hospital where he had undergone a series of tests. Doctors told him he had advanced AIDS, but he continued to deny his diagnosis. When I mentioned to him that he had AIDS, he immediately responded, "Look, I don't have AIDS. I don't know why that doctor keeps saying that. Don't believe him. He's lying on me."
The decline of Jake's distorted mind and worn-out body progressed. The invisible people's visits dwindled. They preferred staying home watching television, rather than spending time in a crowded hospital. Jake was taking tests and too sedated to notice them most of the time. Besides, they had his whole flat to themselves with him out of the way. Jake still kept me abreast of their activities the few times they did come to the hospital. They looked around and made sure he followed the rules. Eventually, he was transferred from the hospital to a secluded area in a nursing home on the other side of the city.
The stigma attached to AIDS caused several people, including some of Jake's friends and family members, to treat him with contempt. Some felt he deserved the disease for being gay. Others avoided him because they were afraid the disease was contagious if they touched him or had contact with things he had touched. After researching AIDS, I thought I would be safe as long as I avoided contact with his body fluids. I noticed that staff members treating him always wore gloves.
When Jake finally accepted his approaching death, he requested that a close male friend come visit him. Maybe he was the same man who had told Jake to leave his house earlier. This simple request for a visitor meant everything to Jake because he knew he would die soon. The friend refused to come, saying he didn't want to see him in that condition. Jake was left with his last request denied.
I participated in Jake's end-of-life care, along with his daughter Cherelyn, a young woman in her twenties who showed real concern. We saw each other a few times at the hospital and started comparing notes regularly on the phone. After discussing Jake's worsening condition and his impending death, we realized a lot needed to be finalized before he died. Personal information about him had to be gathered. We contacted insurance companies and former employers. We explored every possible death benefit. I was impressed with Cherelyn's dedication in staying centered as we completed various tasks. Trying to be her cheerleader, I advised her when she experienced obstacles. When I asked her why she stuck by Jake when several other family members hadn't, she said, "I always looked up to Papa Jake. He's the first person in my family to finish high school. He kept me going until I finished high school myself. That means a lot to me. Plus, I love him as a father. Even though he didn't raise me, he did what he could. His life has always been hard with a lot of rejection."
I admired her as she nurtured Jake at the nursing home. Neither of us had handled a situation like this before, but we made good progress. We talked and learned as we stumbled along in this new territory that confronted us with thoughts about life, death, and people's reasons for acting in negative ways during a crisis. In the midst of all these responsibilities, Cherelyn struggled to take care of her husband, children, and job duties as a waitress. She mentioned several family incidents of disloyalty toward Jake that frustrated and saddened her, but she never faltered in her personal devotion to him.
Knowing how stressed she was, I offered to write Jake's obituary for her. But Cherelyn felt that was something special she had to do herself. Writing in an informal voice, she soulfully described times she remembered with Jake. Sprinkled with exclamatory bursts of excitement like "Papa Jake's the greatest!" with a few typos and misspellings, it was the sweetest, from-the-heart obituary I've ever read. This young woman made of topnotch titanium was a living example of service being nothing but love in work clothes.
One quiet night, Jake lay quietly with a morphine pain patch on his chest. The damaged car of his life had reached its final destination. His previously fluctuating breathing eased slowly into a silent breeze. He closed his weary eyes for the last time as his engine stopped. The invisible demons left for good. His only stalker was Death.
Without either of us realizing it, Jake had introduced me to hospice care. I thought my experience with him was a once-in-a-lifetime occurrence. Like a flowing river, time passed while I labored to swim with the current. A year later, an acquaintance named Sam broke down crying in the parking lot after an exercise class we attended. I only knew him from the class, and he had stopped coming regularly. He told me he had been diagnosed with AIDS. He had kept this secret from others as long as he could. Because he had been absent so often from his job at a hardware store, he knew he couldn't go on working much longer. Family problems increased his need for help. His story resonated with déjà vu that I had no desire to revisit. Perplexed that a similar crisis could be happening to me again, I imagined familiar thorns invading my life's pruned rose garden.
Sam's stable mind concentrated on improving his health. He acknowledged he had AIDS and committed to fight for his life. He knew the time had come when he would have to tell others his secret. We both knew judgment and rejection would follow. I became a better listener by staying quiet while he rambled on about his plans for coping with his illness. He had already started his treatment regimen with a doctor. We went to his clinic appointments together sometimes. His nurse taught him a complex system of using pennies to keep track of the many medications he took around the clock.
Ongoing nausea and diarrhea suppressed most of his desire to socialize with others. He didn't seem to have many friends who were supporting him. Rotting teeth continued to add anguish to his growing list of illness issues. Hoping to get some help, he finally went to a dentist. The dentist examined his mouthful of decayed teeth and promptly announced, "Your teeth are all beyond saving. Any work done to replace them would be extensive and also expensive. There's no reason to go forward with this anyway. You have AIDS and probably won't be around much longer." Some words are better left unsaid or said differently, even when they might be true. The dentist's response angered Sam tremendously. He saw this as another hole in his rapidly sinking life raft.
Sam and his family disagreed on several matters. A few relatives had concerns about visiting him at his home. This bothered him because he felt they thought he would contaminate them with AIDS, even after he had explained to them that he wouldn't. In spite of these problems, there was definite support from a few family members who genuinely cared about him. On rare occasions, relatives came by to visit him. But usually he visited them at their homes.
Even though Sam mentioned seeing a few friends now and then, something was still missing. That something was communication with people who shared his condition, people who could hold on with him to the raft of one another, people who lived his inner turmoil like the rest of us didn't. He joined an AIDS support group and attended regular meetings that offered him opportunities to share his feelings with others who had AIDS.
Sam explained to me, "We go around the room, say our names, and talk about our problems. I thought my situation was bad, but I was surprised to hear about other people who are worse off than me. Some people are out there by themselves with no support, except for this group. I was also surprised to see somebody else there that I knew. This was awkward at first, but later on, it was a relief seeing a familiar face. At first, I didn't want to talk to anybody in the group because I didn't trust them. I felt like I didn't know them well enough to tell them my personal business. Finally, I loosened up. They are the only people who really understand what I'm going through, so I had to open up to them. I know they help me."
"How do they help you?" I asked.
"Well, when I'm with them, I feel like I'm not the only outcast in the world. You think I don't know what I look like in the mirror? That I don't remember how built my body was when I went to exercise classes? I do. Now, I look like a bony freak. I can see why other people stare at me and move away. I'd probably do the same thing if I was in their shoes. But when I'm with my support group, they don't care how I look. They can see past the ugliness of my outside. It's like I'm fighting a war with other people like me on my side. We tell each other any information we know that will make our lives better. Even when it looks like I'm losing the war, they give me hope for the future. I give them hope, too."
Knowing how important this kind of communication was to Sam, I started collecting books for him about people with AIDS. Reading about other people who had what he often called "the virus," he stayed home many days resting on a bed full of his own bones. He delighted in reading words spoken by loving families and friends of people who lived and died with dignity, in spite of society's obstacles and the overall trauma of the disease. Their powerful words formed a rope he could hold onto when the temptation to surrender pressured him to let go.
Christmas came with all the usual holiday gatherings and excitement. Sam remained miserable about his declining condition. He knew his days were numbered and that every holiday could be his last. I had a live, decorated, tabletop tree sent to his house to cheer him up. I could not have imagined how ecstatic he would be about receiving that tree. Displaying it in his living room, he took great pride in reminding guests, "This is a real tree, not a fake one. It came in the mail to my front door. And guess what? It had all the decorations on it!" Not wanting to throw his tree away, he managed to plant it in the back yard after the holidays ended. Even after the tree died, he still wanted to replace it with a similar tree.
Excerpted from Becoming Dead Right by Frances Shani Parker Copyright © 2007 by Frances Shani Parker. Excerpted by permission.
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Posted February 6, 2011
Frances Shani Parker is a very skillful writer and poet who uses beautifully written anecdotes and heartwarming poetry to heighten the readers' awareness of subjects many people fear, death and caring for the dying. I was moved by Ms. Parker's storytelling ability and her perceptive writing that shared with the readers real people and real situations she experienced as an urban hospice volunteer. This book can be used easily as a reference to support individuals, health care workers and legislators who are committed to the improvement of assisting people with dying with dignity. You will definitely enjoy reading this inspiring book on a subject that will touch all of our lives. In fact, I enjoyed the book so much that I suggested it for my monthly book club meeting. The book club members also found the book very informative and several people were inspired to enroll for training as hospice volunteers. If you have a fear or hesitation of reading a book on dying or what to do when forced with the situation of being a caregiver for a dying loved one, this enlightening book is a must read. Faire CarterWas this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted March 14, 2010
Becoming Dead Right: A Hospice
Volunteer in Urban Nursing Homes
Author: Frances Shani Parker
Publisher: Loving Healing Press
Frances Shani Parker has woven a beautiful and touching tapestry of life and death; sharing her stories and poems about the very memorable and wonderful patients she worked with as a hospice volunteer. Already extremely busy as a principal, the author decided to learn about becoming a hospice volunteer. Following the workshops, she began her volunteer stint working with patients in urban nursing homes. She chose to visit patients in nursing homes because she believed they were probably less likely to have family and other visitors, and may be in need of outside companionship . Most of her patients were African America, but of course she had some patients of other ethnic groups also.
By sharing her experiences as a hospice volunteer, she allows her readers to take a look inside a situation most of us know nothing about. Through these stories, we learn about the individual patients she works with, along with gaining a much more thorough understanding of the entire hospice system and philosophy. Dying with dignity and peacefullness is something that we all deserve. Hospice care is an important part of ensuring that many people can experience death this way. Numerous races, ages, religious and spiritual beliefs, and life experiences are illustrated here. The process of dying is something that we, as a society, tend to ignore or leave undiscussed. The role of an individual's life experiences, mindset, ability to communicate and religious beliefs all play a huge part in how they interpret the process of death. Ms. Parker has included poetry along with short stories to share her impressions of her patients. In every instance, she found herself learning more about life, and by sharing these lessons we can learn them too.
The book does a great service by bringing the details of hospice to the general reader. We learn how the hospice system can fit into the healthcare system (or lack thereof) in our country today. The final portion of the book is a "tour" of what could be described as the epitome of the place that we all wish we could utilize for ourselves or family members as we/they face the end of life on earth. With the aging of the baby boomer segment of our population, the needs of Americans from the hospice care system becomes greater and greater.
These stories are offered with love and respect by the author to each reader, and you feel that caring and warmth that she offered to each patient she worked with. I will remember many of the stories and the patients they illustrate for some time to come. It's both touching and thought-provoking, and would be a book appreciated at many different levels by all readers. Exceptional ! !
Posted November 28, 2009
If you work with the aging or the dying, you need to read this book. This book is a pleasure to read as it not only addresses the important issues within our nursing homes, Ms. Parker's writing is lyrical and a joy. The book begins with the personal stories of those living and dying in nursing homes. In the last section of her book, she talks about how we can improve our nursing home systems. Things can get better and Ms. Parker can guide us along our way.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted August 14, 2009
Becoming Dead Right by Frances Shari Parker is a wonderful, touching, moving portrait of what it means to help another person die "right". I chose to read this book because I have an aging parent living with me and I am worried about how to help with the end of his life and what I can do to help it be pain free, gentle, and "right". Through stories of her work with Hospice Ms. Parker shows us how each and every person deserves to die with peace, dignity, and pain free. She was a school principal and almost accidentally happened into her volunteer work with Hospice after helping two people who were dying. This book was so touching that I couldn't put it down and read it in two hours. I thought it might upset and depress me but I came away hopeful and really wanting to help bring about the vision Parker sets out for the perfect "Baby Boomer Haven."
The stories of her work with Hospice patients in nursing homes are told like she is your friend sitting next to you talking about her experiences. The descriptions of the people she worked with and helped were real and not sugar coated. There are a lot of lessons in this book about how we should treat people who are dying and how to help their families, as well as how our nursing homes should be set up and run. She gives a great description of Hospice and the work that it's volunteers do. Anyone who is thinking about becoming a volunteer or plans on working with people who are dying should read this book and gain some idea what it might be like.
The last chapter contains a wonderful "tour" of what the perfect nursing/retirement home would be like and it is called "Baby Boomer Haven". Every detail is described and it is truly a beautiful place. It made me wonder why we don't already have this type of home and how we can have them in the future. If more people cared like described in this book we could all become dead---right. A wonderful hopeful book that I recommend highly.
Posted January 12, 2009
In her book "Becoming Dead Right", Frances Shani Parker displays an extraordinary love of humankind and demonstrates to the reader the importance of care and consideration for people who are often shunned and neglected in the last days of their life. It is refreshing to know that such kindness exists. The message the book delivers is a lesson to all of us in how to dedicate our lives to helping others, how to accept differences within the wide spectrum of races, ethnicities and cultures and is a must read for everyone facing the challenges of how to cope with the death experience.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted November 3, 2008
Reading Frances Shani Parker¿s Becoming Dead Right brought a new understanding and acceptance of the death journey to me. Her insightful stories and Ten Tips for Becoming Dead Right helped me process the recent death of a family member and two of my closest neighbors and friends. Two of her tips that were especially helpful to me were:<BR/><BR/>¿ Be informed and proactive.<BR/>¿ Put death wishes in writing.<BR/><BR/>The book, as a whole, gave me a broader perspective on death and dying. I found reading it to be a very worthwhile experience.<BR/><BR/>Johnnie Boyer<BR/>Retired Educator and AdministratorWas this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted May 25, 2008
Author Frances Shani Parker demonstrates sound judgement and farsightedness in this publication. She weaves a captivating, intricate, insightful, empathetic and even amusing tapestry on the subjects of near death and dying issues. Written from an insider's perspective, as she worked for many years as a hospice and nursing home volunteer, the book is replete with stories well told and lessons well taught. The book is a must read not just for medical professionals and caregivers, but for everyone concerned with the implementation of best practices in hospice and nursing care facilities nation wide.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted May 21, 2008
This book, ¿Becoming Dead Right¿, has opened my eyes as to how important the little things are to someone who is ill. I am experiencing an illness that is incurable, but friends and acquaintances encourage me by saying kind words, and doing nice thing for me. They brush my hair, rub my hands, give small gifts, hug and kiss me, lie beside me, and just lift my spirit in any way they can. That means a lot to a sick person. We don't feel so lonely and alone. Everyone needs to feel loved, and it does not take a lot. By letting patients know that they are loved, showing them that you care, just might cause them to want to live a little longer or maybe save their life. We never know, but it sure does not hurt to try. This author has really inspired me. I hope more people read this book. The author of this book has given us very important information to help patients and families deal with these kinds of illnesses. Some of you will be surprised to know how much these technical skills will help lift a patient¿s spirits.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted May 20, 2008
I have read 'Becoming Dead Right' several times, and I can't get enough of it. Each time I read it, I learn something new. I have learned so much about how to treat different kinds of illnesses, and I was able to use some of these techniques with my sister-in-law before she passed. Almost too late for a friend of mine, she had the book briefly before she lost her mother to dementia. She went to see her mother every day, but did not really know what to do or how to treat her, other than loving her and being nice to her. Sometimes her mother was afraid of her. I loaned her my book, and she was so excited to learn some of the simple things that makes a patient happy and content. She lost her mother over a month ago, but she had time to do some of the little extra things we don't think about because of the ilness. We sometimes thnk people with dementia don't comprehend what is going on around then, and sometimes that is true. But there are times when they are alert, and that is a good time to talk about things you know they like, remember or did. Those were the happiest times I had with my brother. It would seem like old times when he was alert, but there were times when he did not remember me, and that was sad for all of us. When he was in that state of mind, I would sit and talk to him, kiss him, rub his head, things that I knew he liked. That would make him happy. At times, it made him look up at me and call my name, smile and ask, 'When did you come in?' I am excited about 'Becoming Dead Right.' There is so much information in this book to help us know what to do if we have a family member or friend with these kinds of illnesses. This book has taught me a lot of things that I can tell others about when it comes to the welfare and care of their families or patients.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted January 28, 2011
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Posted November 8, 2009
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Posted February 15, 2009
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Posted January 7, 2009
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