An unintended journey a caregiver's guide to dementia /
"According to the 2009 census, more than five million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the fifteen million family caregivers who, in total, contribute seventeen billion hours of unpaid care each...
| Main Author: | Shagam, Janet Yagoda. |
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| Format: | Book |
| Language: | English |
| Published: |
Amherst, New York :
Prometheus Books,
[2013]
©2013. |
| Physical Description: |
427 pages : illustrations ; 24 cm. |
| Subjects: | |
| Online Access: |
Cover image |
| Summary: |
"According to the 2009 census, more than five million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the fifteen million family caregivers who, in total, contribute seventeen billion hours of unpaid care each year. This book addresses the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care. The author, an experienced medical and science writer known for her ability to clearly explain complex and emotionally sensitive topics, is also a former family caregiver herself. Using both personal narrative and well-researched, expert-verified content, she guides readers through the often-confusing and challenging world of dementia care. She carefully escorts caregivers through the basics of dementia as a brain disorder, its accompanying behaviors, the procedures used to diagnose and stage the disease, and the legal aspects of providing care for an adult who is no longer competent. She also covers topics not usually included in other books on dementia: family dynamics, caregiver burnout, elder abuse, incontinence, finances and paying for care, the challenges same-sex families face, and coping with the eventuality of death and estate management. Each chapter begins with a real-life vignette taken from the author's personal experience and concludes with "Frequently Asked Questions" and "Worksheets" sections. The FAQs tackle specific issues and situations that often make caregiving such a challenge. The worksheets are a tool to help readers organize, evaluate, and self-reflect. A glossary of terms, an appendix, and references for further reading give readers a command of the vocabulary clinicians use and access to valuable resources"-- "More than five million people living in the United States have Alzheimer's disease or some other form of dementia. "An Unintended Journey" is designed to address the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care"-- |
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| Item Description: |
Includes bibliographical references and index. 1. An unintended journey -- 2. What is happening? : A little history ; Dementia is more than one disease ; Why does it matter? ; Memory and aging ; Mild cognitive impairment, more than normal forgetfulness ; Alzheimer disease ; Vascular dementia ; Frontotemporal lobe dementia ; Dementia with Lewy bodies ; Confabulations, delusions, and hallucinations, tall tales and truthful lies -- 3. What could this be? : Diagnosing dementia, why it's important ; Memory loss doesn't always mean dementia ; Cognition and cognitive function ; Looking inside the brain, medical imaging ; A few words from the medical imaging facility ; Family genetics and dementia ; Just over the horizon, new ways to diagnose dementia -- 4. Managing behavior, theirs and yours : Home again ; Who is this person? ; Who is in charge? ; Bugs on the wall and picnics on the front lawn ; A very deep sleep ; When the sun goes down ; Wandering ; It's embarrassing for everyone ; It's hard to imagine ; Such strange names ; Medication ; Behavioral management strategies ; Medications used to quiet dementia behaviors ; Maybe you could use a little something too ; Caregiver syndrome, giving how you feel a name ; Elder abuse -- 5. One day at a time : What's different? ; Who are the family caregivers? ; Legal considerations ; Finances ; Considering paid caregivers ; What is it that paid caregivers do? ; Finding paid caregivers ; Hiring an independent caregiver ; Paying independent caregivers ; Not-for-profit eldercare services ; Help! ; Little things that help everyone ; Communicating with your parent's caregiver ; Medical care ; Palliative care ; Medical alerts ; Emergencies ; The big what-if ; Respite ; Distance care ; Making difficult decisions ; How to pay for care ; For veterans and their family caregivers -- 6. Family dynamics : A point of view ; Where family disharmony begins ; The dilemma of the POA and the primary caregiver ; Taking a closer look at ourselves ; Some challenging family situations ; Afterward -- 7. When the little things are really the big things : It's the little things ; House and home ; Visiting with family and friends ; Dementia and the creative spirit ; Driving ; Daily money matters ; Grooming and outward appearances ; Food is a sensory experience ; Eating is more than food ; Groceries and household supplies ; The good earth ; Nutrition ; Food wars ; Preparing meals ; Meals on wheels ; Finger foods ; Pureed foods ; Tube-feeding ; Oh, and one more little thing -- 8. Finding the right care facility : Plan ahead ; How to pay for care ; Types of care facilities ; Choosing an assisted living facility ; Medication revisited ; Afterward ; Another kind of assisted living ; Nursing homes ; Finding a nursing home ; Antipsychotic use in nursing homes ; Religion, cultural practices, and residential dementia care ; Assisted living and the lesbian, gay, bisexual, and transgender communities -- 9. It's time : Musings and other thoughts ; Moving toward a decision ; Stepping over the invisible line ; First steps ; Clothing ; Medication ; Room furnishings ; Leaving home ; The day is here -- 10. Settling in : Adjusting ; Helping your parent accept assisted living ; Is this home? ; More than an adjustment to a new place ; What's going on? ; Elder abuse ; Other changes ; Visiting ; A few words of encouragement -- 11. Failing heath : A different kind of phone call ; Legal considerations ; What to do! ; Turning another corner ; Just one signature ; Dementia as a terminal disease ; Eating difficulties ; Talking about less aggressive care ; End-of-life and palliative care ; Dementia and palliative care ; Some tough decisions ; Turning the corner ; Hospice ; Hospice criteria ; Hospice and dementia ; Paying for hospice ; Long-lasting words -- 12. Passing : Dying from dementia ; Stages of dying ; Sitting and waiting ; A good death ; Some important things ; Death at home ; Death at home and hospice care ; Hours away ; Good grief ; Not-so-good grief ; Funerals ; Burial options ; Cemetery plots ; Burial away from home ; Be aware of your feelings -- 13. Picking up the pieces, peeling back the layers : Afterward ; What's next? ; Getting started ; Keeping records ; The estate ; Notifications ; Life insurance and annuity benefits ; Veteran's benefits ; Unpaid bills ; House cleaning ; Closing the estate ; Very last steps -- 14. Talking among friends : Ralph ; Cecelia ; Ellen ; Mable ; Mary ; Shirley ; Tom ; The Lewis family ; Ruby ; Tommie ; Last words -- Glossary -- Online resources. "According to the 2009 census, more than five million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the fifteen million family caregivers who, in total, contribute seventeen billion hours of unpaid care each year. This book addresses the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care. The author, an experienced medical and science writer known for her ability to clearly explain complex and emotionally sensitive topics, is also a former family caregiver herself. Using both personal narrative and well-researched, expert-verified content, she guides readers through the often-confusing and challenging world of dementia care. She carefully escorts caregivers through the basics of dementia as a brain disorder, its accompanying behaviors, the procedures used to diagnose and stage the disease, and the legal aspects of providing care for an adult who is no longer competent. She also covers topics not usually included in other books on dementia: family dynamics, caregiver burnout, elder abuse, incontinence, finances and paying for care, the challenges same-sex families face, and coping with the eventuality of death and estate management. Each chapter begins with a real-life vignette taken from the author's personal experience and concludes with "Frequently Asked Questions" and "Worksheets" sections. The FAQs tackle specific issues and situations that often make caregiving such a challenge. The worksheets are a tool to help readers organize, evaluate, and self-reflect. A glossary of terms, an appendix, and references for further reading give readers a command of the vocabulary clinicians use and access to valuable resources"-- Provided by publisher. "More than five million people living in the United States have Alzheimer's disease or some other form of dementia. "An Unintended Journey" is designed to address the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care"-- Provided by publisher. |
| Physical Description: |
427 pages : illustrations ; 24 cm. |
| Bibliography: |
Includes bibliographical references and index. |
| ISBN: |
9781616147518 1616147512 |