Becoming Dead Right (eBook)

A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker (Autor)

eBook Download: EPUB

2007 | 1. Auflage
216 Seiten
Loving Healing Press Inc (Verlag)
978-1-61599-924-8 (ISBN)

Infos

All of us are entitled to the rewards of a peaceful, pain-free death. This book honors that with true stories about hospice patients and inspiring insights from the author. Becoming Dead Right guides us through the general and 'how to' information maze that prepares us for dealing with death.

Improving and expanding hospice services will require systemic changes in healthcare institutionss outreach to diverse populations, and funding. With the inclusion of hospice programs in nursing homes, dying with dignity becomes even more important. Millions of aging baby boomers heighten the urgency for better hospice care and conditions in nursing homes.
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
MED042000 Medical : Terminal Care
FAM017000 Family & Relationships : Eldercare
SOC036000 Social Science : Death & Dying

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All of us are entitled to the rewards of a peaceful, pain-free death. This book honors that with true stories about hospice patients and inspiring insights from the author. Becoming Dead Right guides us through the general and "e;how to"e; information maze that prepares us for dealing with death. Improving and expanding hospice services will require systemic changes in healthcare institutionss outreach to diverse populations, and funding. With the inclusion of hospice programs in nursing homes, dying with dignity becomes even more important. Millions of aging baby boomers heighten the urgency for better hospice care and conditions in nursing homes. Praise for Becoming Dead Right "e;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."e; -- Dr. Roger Woodruff, Director of Palliative Care, International Association for Hospice and Palliative Care, Austin Health, Melbourne, Australia "e;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."e; -- Dr. Peter A. Lichtenberg, Director, Institute of Gerontology, Wayne State University, Detroit, Michigan "e;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."e; --Alice Hedt, Executive Director, National Citizens Coalition for Nursing Home Reform MED042000 Medical : Terminal Care FAM017000 Family & Relationships : Eldercare SOC036000 Social Science : Death & Dying

Textauszug

1

Message from the Universe

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...

Produkt-Details

• Erscheint lt. Verlag: 1.9.2007
• Vorwort: Frances Shani Parker
• Sprache: englisch
• Themenwelt: Sachbuch/Ratgeber ► Geschichte / Politik ► Politik / Gesellschaft
• Themenwelt: Sachbuch/Ratgeber ► Gesundheit / Leben / Psychologie ► Psychologie
• Themenwelt: Geisteswissenschaften ► Psychologie ► Trennung / Trauer
• Themenwelt: Medizin / Pharmazie ► Pflege ► Palliativpflege / Sterbebegleitung
• Schlagworte: Australia • Death • Dying • Eldercare • Family • Hospice • Medical • relationships • Social Science • Terminal Care
• ISBN-10: 1-61599-924-8 / 1615999248
• ISBN-13: 978-1-61599-924-8 / 9781615999248