Dignity for deeply forgetful people How caregivers can meet the challenges of Alzheimer's disease
Book - 2022
"A new ethics guideline for caregivers of "deeply forgetful people" and a program on how to communicate and connect based on 30 years of community dialogues through Alzheimer's organizations across the globe"--
- Subjects
- Published
-
Baltimore, Maryland :
Johns Hopkins University Press
2022.
- Language
- English
- Main Author
- Other Authors
- Physical Description
- xv, 268 pages : illustrations ; 24 cm
- Bibliography
- Includes bibliographical references (pages 241-253) and index.
- ISBN
- 9781421442501
- Preface
- 1. In Praise of Caregivers and Dignity
- The Ultimate Reality of Human Interdependence
- Seekers of Deeper Justice
- Learn First from the Caregiver
- Noticing Human Dignity
- "Deeply Forgetful People"
- Words of De-dignification
- Connecting with Art and Music
- Three Cultures of Dignity
- The Confucian Approach in China and Japan
- Love at Work in Poverty: Leo and Sister May
- An Ethics of Care
- Caregiver Questions as Alzheimer's Unfolds
- 2. Hope in Caring for Deeply Forgetful People
- Why It Matters and Where to Find It
- Hope in Faith: Caregiver Orien Reid
- Hope in the Biomedical Model
- Hope in Being Open to Surprises
- Hope in Man's Best Friend: The Alzheimer's Service Dog
- Hope in Twelve Aspects of the Enduring Self
- Hope in the Moments of Joy
- Conclusions
- 3. Answers to Sixteen Questions Caregivers Ask from Diagnosis to Dying
- Alzheimer's as a Cause of "Dementia"
- Answers to Sixteen Questions
- Q1. Should we break the news to Grandma?
- Q2. How quickly will I decline?
- Q3. Are there really any effective drugs to stop this disease?
- Q4. Can tender loving care make a difference or is it all just biological?
- Q5. Should we tell other people about my diagnosis?
- Q6. Will "I" still be there, more or less, despite the silence or confusion?
- Q7. Will I "suffer"?
- Q8. Do I really want to continue to treat my heart failure or diabetes or dialysis or cancer as this disease unfolds?
- Q9. Will I be a burden to those who take care of me?
- Q10. Is genetic testing a good idea?
- Q11. Should I file a living will or a durable power of attorney for health care?
- Q12. Will my remaining ability to make choices be respected?
- Q13. Will I be physically or chemically restrained?
- Q14. Can I drive?
- Q15. Should I participate in research?
- Q16. Can I avoid technology and tubes so I can just die naturally?
- Conclusions
- 4. The Seventeenth Question: Preemptive Physician-Assisted Suicide (PPAS) for Alzheimer's Disease
- A Caution
- Two Cases of PPAS
- Grandma J
- Janet Adkins and Dr. Kevorkian
- Sources of Ambivalence: Five Reasons to Question PPAS
- Reason One: Do you know how this disease will progress?
- Reason Two: What kind of legacy is left behind?
- Reason Three: What about interdependence?
- Reason Four: Can we learn to notice the expressions of selfhood?
- Reason Five: Isn't hospice good enough?
- Why Not Legalize PPAS in the United States?
- Caution One: Will PPAS diminish social commitment to long-term care?
- Caution Two: Will PPAS spill over into other "nonterminal" illness categories?
- Caution Three: Is there a risk of going from voluntary to nonvoluntary PPAS and even euthanasia?
- Conclusions
- 5. A Caregiver's Ethical Purpose
- Preserving Dignity, Ten Manifestations of Care, and Respect for the Whole Story of a Life
- Dignity
- Four Stories of Enduring Dignity
- Jim's Glorious Twig
- Jan's Awesome New Snowflakes
- Ruth's Deep Gratitude
- Clint's Cowboy Hat
- Acting against Indignity and Humiliation
- The Nazi Doctors and the Perils of Forgetfulness
- The Stark Humiliation of Mrs. H
- Dignity in the Parking Lot
- The Circle of Care: Ten Manifestations
- The Way of Celebration
- The Way of Helping
- The Way of Forgiveness
- The Way of Carefrontation
- The Way of Mirth
- The Way of Respect
- The Way of Attentive Listening
- The Way of Compassion
- The Way of Loyalty
- The Way of Creativity
- Respect for the Whole Story of a Life
- The Example of Sexual Intimacy and Integrity
- Additional Core Values in Caregiver Ethics
- Breaking Free from Hypercognitive Personhood
- Is a Deeply Forgetful Person a Person? Yes.
- Caring Communication
- Can We Learn to Communicate?
- Conclusions
- 6. Respecting the Preferences of Deeply Forgetful People in Health Care and Research
- Everyday Preferences
- Health Care Decisions
- Reconceptualization: Compassionate Autonomy
- See a Lawyer
- Research Ethics
- 7. "Is Grandma Still There?"
- The Mystery of Continuing Self-Identity
- "Paradoxical" or "Terminal" Lucidity
- On Spirituality
- A Trip to Bangalore
- Fifteen Focus Groups
- A Speculative Model of Continuing Selfhood
- The Continuing Mystery of Autobiographical Memory
- Consciousness as the Ground of Personhood and Dignity
- Human Consciousness and Post-Materialism
- Hope in Deep Self-identity
- A Pastoral Conclusion
- An Epilogue: North Wind
- A Caregiver Resilience Program Meeting Alzheimer's
- References
- Acknowledgments
- Index