A Caregiver's Guide to Dementia: A Caregiver's Guide to Dementia
376
A Caregiver's Guide to Dementia: A Caregiver's Guide to Dementia
376eBook
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Overview
*New Edition with Updated dementia, dementia care, and resource information.*
According to the Alzheimer’s Association, there are more than six million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the sixteen million family caregivers who, in total, contribute nineteen 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.
Product Details
| ISBN-13: | 9781616147525 |
|---|---|
| Publisher: | Prometheus Books |
| Publication date: | 07/16/2013 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 376 |
| File size: | 3 MB |
About the Author
Read an Excerpt
an unintended JOURNEY
A Caregiver's Guide to DEMENTIA
By JANET YAGODA SHAGAM
Prometheus Books
Copyright © 2013 Janet YagodaAll rights reserved.
ISBN: 978-1-61614-752-5
CHAPTER 1
AN UNINTENDED JOURNEY
Social worker, man, age 67, September 2010
This book is about my mother and our journey through dementia. It was a trip neither of us had planned on taking together.
Dorothy Yagoda was a furiously independent woman with an inordinately strong sense of privacy. Concern about how she might appear to others made it impossible for her to share intimacies with friends or to have frank conversations with her doctors and family. Everything was just fine until it wasn't. By that time, Dorothy was no longer able to make competent decisions or even comprehend that things were not okay.
It's hard to say when dementia became bigger than her quirky and difficult personality. Did the first sign occur more than 30 years ago when, in her midsixties, she was certain that family members were spreading lies? Was it 20 years ago when she informed me that, because of my presumed disloyalty, she would never speak to me again? Was it less than 10 years ago when she could not follow her doctor's written colonoscopy preparation directions? Maybe her inability to use the phonebook was an early indication of cognitive decline? Perhaps the first sign of dementia was her propensity to open cereal boxes from the bottom.
A few months after Dorothy's death, I asked the members of her neighborhood book club when they first saw changes. Looking back, they said, it must have been about 12 years ago, when she brought a reference book for them to consider for their next reading.
It is easy to explain the odd behaviors of people you see frequently without considering dementia. This is especially true when there are no big or sudden personality changes. The person is the same—only more so. You think, "This is just what happens when people get old."
Dementia slowly and silently crept into our family life. Without realizing it, we made accommodations to avoid confrontations and misunderstandings. We got into the habit of keeping conversations short and simple, and we never told her about plans until the last moment. We expected having to explain things to her over and over again. And by the same token, we got used to hearing slightly muddled information from her over and over again.
Dorothy was very good at giving plausible reasons to explain strange situations. The print in the phonebook was too small, we had forgotten what she had said, or she fell because a nameless woman pushed her off the stairs. Dorothy was an expert at inventing her own reality and shifting the responsibility for her misunderstandings and foibles to others.
Her fall, in combination with osteoporosis and compressed vertebrae, caused pain that intensified to the point where Dorothy could no longer walk. A three-week hospitalization to reduce back pain and inflammation and several more weeks in a rehabilitation facility did get her back on her feet. However, the time she spent in unfamiliar surroundings made Dorothy increasingly confused, belligerent, and combative. An evaluation of her memory and ability to make decisions showed that she could no longer live in her home without assistance. And incontinence, a problem we had long suspected, was another difficulty she could no longer hide. The doctors suggested that we place her in a nursing home. One doctor told Dorothy she needed to use a walker. Her response: "I'd rather kill myself."
It didn't take long to see that the nursing home wasn't the right place for her. Based on discussions with other family members, and against the advice of a medical social worker, I agreed to take on the major responsibility of moving her back into her house and overseeing her care. It seemed like the right thing to do, and it certainly would be better for her and possibly easier for me.
Getting the house ready for her arrival was revealing. It was sad to find the soiled underwear she had hidden in the bathroom. It was frightening to discover a melted tea kettle and numerous blackened pots and pans concealed behind less damaged cookware. And it was unsettling to think about my future, my ability to keep up with work and my own home, and the possibility of ever having any free time.
I am writing this book both as a daughter who needs to tell her story and as a medical writer who knows there is a story to tell. Of Dorothy's two children, I am the youngest. And as is often the case, the responsibility of caring for a parent who has dementia often falls on the shoulders of one sibling.
The reasons are many. Among them are location; some family members live too far away to take on the responsibility of daily care. Others have their own problems that take precedence. And some don't know how to care.
I'm not sure when my role as a caregiver first started. By some criteria, it might have been as far back as 47 years ago, when the death of my father required that I take on responsibilities beyond my thirteen years. Maybe care-giving began in 1988 when my mother opted to move about one mile from my house rather than to the city where her other adult child lived. Maybe it began 15 years ago, when daily phone conversation was my solution to maintaining her emotional stability. And without question, my life specifically as a dementia caregiver began in the summer of 2007, when a nameless woman became Dorothy's scapegoat for anything that defied explanation.
My personal story is a real one. It's painful. It's exhausting. My story also describes a process rich in personal growth. And yes, if I knew then what I know now, I'd do it again. However, unlike my first experience, I would know how to handle many of the situations that make dementia challenging. I would also know to take better care of myself.
Dementia care is a hazardous occupation. In addition to learning how to safely transfer an uncooperative adult into and out of a bathtub without anyone getting hurt, studies show that family caregivers are at increased risk for depression, anxiety, heart disease, and stroke. The same studies show that elderly dementia caregivers are more likely to die than people of the same age who aren't responsible for another's care.
As dementia progresses, it gets more and more difficult to see your parent and dementia as separate entities. Dementia robs people of their education, of their careers, and of their personal history. However, as a matter of respect to the person you once knew, you do your best to remember them as fathers and mothers and people of accomplishment who at one time could smile, crack a joke, or maybe make a homemade pie.
Because I owe you more than just my story, you will read about the experiences of other family caregivers. Some of them, rather than taking care of a parent, are responsible for a grandparent, an aunt, an uncle, or perhaps a sibling, a spouse or a partner.
And in my role as a medical writer, you can take advantage of the research that I had neither the time nor the fortitude to do while being an active caregiver. You will learn to think ahead and make arrangements to become your parent's power of attorney or, if necessary, their guardian and conservator. You will also read about the advantages and disadvantages of hiring agency caregivers as well as learn how to find helpful community resources. Other topics, such as behavior management, food, clothing and bathing issues, medication, and the eventual need for palliative and hospice care, will also be presented in a sensitive and approachable manner.
At the other end, when death overtakes dementia's hold, you will read about a new journey—the transition from caregiver to mourner and estate manager. The end result is a book that I hope will give you the emotional support and the practical information you need to make healthf
(Continues...)
Excerpted from an unintended JOURNEY by JANET YAGODA SHAGAM. Copyright © 2013 Janet Yagoda. Excerpted by permission of Prometheus Books.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
FOREWORD BY JORDAN I. KOSBERG, PHD, ACSW.................... 17
FOREWORD BY EDWARD R. FANCOVIC, MD.................... 21
ACKNOWLEDGMENTS.................... 25
PROLOGUE.................... 27
CHAPTER 1. AN UNINTENDED JOURNEY.................... 29
CHAPTER 2. WHAT IS HAPPENING?.................... 33
CHAPTER 3. WHAT COULD THIS BE?.................... 52
CHAPTER 4. MANAGING BEHAVIOR—THEIRS AND YOURS.................... 75
CHAPTER 5. ONE DAY AT A TIME.................... 116
CHAPTER 6. FAMILY DYNAMICS.................... 168
CHAPTER 7. WHEN THE LITTLE THINGS ARE REALLY THE BIG THINGS................ 184
CHAPTER 8. FINDING THE RIGHT CARE FACILITY.................... 213
CHAPTER 9. IT'S TIME.................... 246
CHAPTER 10. SETTLING IN.................... 260
CHAPTER 11. FAILING HEALTH.................... 279
CHAPTER 12. PASSING.................... 305
CHAPTER 13. PICKING UP THE PIECES, PEELING BACK THE LAYERS................. 338
CHAPTER 14. TALKING AMONG FRIENDS.................... 362
GLOSSARY.................... 379
NOTES.................... 393
WANT TO KNOW MORE?.................... 401
ONLINE RESOURCES.................... 407
INDEX.................... 419