Progressive, untreatable nerve and muscle diseases transformed the author's life from having been a college athlete to needing a wheelchair and special equipment for day-to-day activities. While dealing with his own conditions, he was faced with the unique challenge of being the sole caregiver for his wife who suffers from Alzheimer's disease. He has written this experience-based book to help people with life-altering medical conditions and those dealing with challenging caregiving responsibilities. Comprehensive in scope, it covers topics including grief, finances, safety and end-of-life planning. This is a resource book containing many references aimed at helping the reader overcome their challenges, maintain their independence and have happy, fulfilling lives.
Progressive, untreatable nerve and muscle diseases transformed the author's life from having been a college athlete to needing a wheelchair and special equipment for day-to-day activities. While dealing with his own conditions, he was faced with the unique challenge of being the sole caregiver for his wife who suffers from Alzheimer's disease. He has written this experience-based book to help people with life-altering medical conditions and those dealing with challenging caregiving responsibilities. Comprehensive in scope, it covers topics including grief, finances, safety and end-of-life planning. This is a resource book containing many references aimed at helping the reader overcome their challenges, maintain their independence and have happy, fulfilling lives.
Why is this book important to read? Beyond Caregiving contains a plethora of information that the reader will find very useful in coping with the challenges of providing care. In a nutshell, the book is about the deeper understanding of the role of a caregiver, learning creative ways to secure much need resources and services, maneuvering through the complex health care system, and most of all learning to enjoy and see the positivity in everything we do despite what life may bring to our fruitful undertaking. As an educator and advocate for the disabled and the developmentally challenged for 14 years; and as a Social Services Director at several skilled nursing facilities for 5-years, Romwell witnessed most of the challenges that caregivers' and their families face up in dealing with the task. His goal in writing the book is to help alleviate caregiver stress in navigating through the difficult emotional, psychological, and financial challenges of caregiving. The book shall serve as a caregiver's guide in maneuvering through the complex healthcare delivery system and present creative ideas in procuring much-needed support from private entities, state and federally funded programs, and services available in the community. The book also illustrates steps, and possible solutions in the appeals process that a caregiver may apply in the event of an unjust or unfair denial of rights of a developmentally challenged adult or a child. The goal is to mitigate the out-of-pocket costs of an already financially burdened population. Beyond Caregiving likewise presents real-life cases and situations experienced by actual patients that benefitted from the author's services during his career as a social worker-case manager. In reading the book, the reader will understand why it is difficult to provide care to different people, particularly patients with unique developmental challenges. The reader will also discover the correlation between aggressive behavior and medical disability, which explains why people act the way they do, sometimes even without reason. And last but not the least, the book provides useful resources for the reader and their families in dealing with the difficult challenges of providing continuum of care brought by the lack of availability of community resources, and the defective post-hospitalization services.
Frequently, people with developmental disabilities are excluded from bereavement ceremonies when a loved one or friend dies, therefore not receiving the special care needed for comprehending their own feelings of loss. Focusing on creating mourning rituals for special needs people, this guide offers specific rituals and techniques for caregivers to use while helping explain death and dying. With more than 20 examples such as the use of pictures and storytelling or drawing and music, these practical tools can substantially lend to the understanding of grief and sadness for intellectually and developmentally disabled adults and adolescents.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
ARE YOU SUDDENLY THE CAREGIVER FOR YOUR SPOUSE? ARE YOU FEELING BURNT OUT AND ANGRY? Switching roles from spouse to full time caregiver can be a lonely journey. Emotionally you are at your limit. My story is to tell you that you are not alone. This book is to show you that: -you are not alone in your feelings -your feelings are justified -don't be afraid to speak up, you are not a bad person because you have feelings -taking time for yourself is a requirement -everything gets better with time. This book speaks the truth through the eyes of a spouse caring for her disabled husband. If you are struggling. Let me share my story. Remember, you are not alone in these unchartered waters. Scroll up and click the buy button. Knowing you are not alone is half the journey!
This book is based on the author's own experiences as a social worker and caregiver and is intended to help other caregivers obtain a fuller life for themselves and their care recipients.
Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability.
A riveting and redemptive family memoir, The Four Walls of My Freedom is Donna Thomson’s account of raising a son with cerebral palsy and a passionate appeal to change the way we think about “the good life.” Donna Thomson’s life was forever changed when her son Nicholas was born with cerebral palsy. A former actor, director, and teacher, Donna became his primary caregiver and embarked on a second career as a disability activist, author, and consultant. Thomson vividly describes her experience in treading delicately through daily care, emergencies, and medical bureaucracy as she and her family cope with her son’s condition while maintaining value and dignity (for Nicholas, too). She brilliantly demonstrates the vital contribution that people with disabilities make to our society and addresses the ethics and economics of giving and receiving care. Featuring an introduction by John Ralston Saul, and two new chapters, The Four Walls of My Freedom is a passionate appeal to change to the way we think about the “good life” that will touch anyone caring for the life of another.
