My Mother's Voice by Sally Callahan
Review by Phyllis Laudano, Staff Writer
"My Mother's Voice"
|In a nutshell: In a very honest and poignant manner the author shares her
experiences and the knowledge she gained while serving as her mothers primary
caregiver for more than ten years. It is an invaluable source for information, short
"to do" lists and guidance for anyone who has a loved one that has been
diagnosed with Alzheimers Disease, but its particular strengths are legal and
My Mothers Voice is an extraordinary book written by an extraordinary individual. What makes author Sally Callahan so unique is the unconditional and selfless love, which guided and controlled all she did during her agonizing fifteen-year journey as her mothers primary caregiver-surrogate. It was this love that helped her to focus purely on her mothers needs and wishes while dealing with the formidable task of caring for her mother. As she helplessly witnessed her mothers slow deterioration from the ravages of Alzheimers disease, she was also suddenly thrust into a world fraught with difficult medical, legal and financial decisions, conflicts with siblings and at time medical professionals, and the physical and emotional exhaustion which plagues the caregiver on a daily basis.
While the author never intended it to be a guidebook, My Mothers Voice is an invaluable resource to anyone who has a loved one diagnosed with Alzheimers Disease. Not only does the author chronicle every aspect of the disease process as she and her mother experienced it, but also does so in an honest and frank manner. Her willingness to reveal her innermost thoughts, feelings and experiences sends a strong message to the reader that Alzheimers is survivable for the caregiver.
Each chapter contains information in rich detail outlining all aspects of Alzheimers caregiving. Most chapters also include tables, checklists and charts designed to help you organize and chronicle important information and simplify tasks. The book concludes with five appendixes and a bibliography that offer additional resources to help ease the burden of the Alzheimers caregiver. The resources are carefully organized for ease of reference.
Topics Discussed/Table of Contents
Chapter 1: My Mothers Voice- accepting the diagnosis, Habilitation therapy, choosing a surrogate voice, families, accepting changes in your loved one, Table: assessing potential surrogates.
Chapter 2: The Nature of Decisions- learning decision making skills, ethics, dealing with disagreements among family members and professionals, the anatomy of an Alzheimers diagnosis.
Chapter 3: Quality of Life- knowing the patients definition of "quality of life", discusses: dignity, respect, manners, disrespect, perspective, comfort, full functiooooonality, independence vs. safety, driving a car, traveling, death, euthanasia and suicide, Table: behavioral log.
Chapter 4: Legal and Financial Decisions- setting goals, learning legal terminology, finding qualified professionals to help, planning for the future, Tables: asset and liability tracking list, monthly inflow and outflow report, note pages.
Chapter 5: Living Arrangements- home care, activities of daily living, nutrition and medication, finding support, finding the right home health aide, adult day care, the patient living with their grown child, Table: toileting schedule.
Chapter 6: Long Term Care-finding a facility, maintaining the patients wishes, values, quality of life vs. professional opinions, advice on dealing with facility staff, levels of treatment concerning medical intervention, Ombudsman programs, Tables: long term care facility levels of care, questions to ask when evaluating an Alzheimers unit, Alzheimers unit specifications, non-Alzheimers unit facility questions, theoretical concepts, medical objectives and levels of care.
Chapter 7: Medical Decisions- general medical care which all people require, Alzheimers related medical care, communicating medical decisions, Table: seizure log
Chapter 8: Caring for the Caregiver- the importance of taking care of yourself, you are not being selfish, Tables: needs assessment tool, sleep log, coping strategies.
Chapter 9: Letting Go- accepting the inevitable outcome facing Alzheimers patients and their families, holidays.
Chapter 10: End-stage Decisions- eating and feeding difficulties, comfort measures, the right to die, the decision to withhold treatment, autopsy, spiritual care of the patient and family.
Chapter 11: Saying Good-bye: fulfilling your promises to respect your loved ones wishes in their last hours as a last gift of love, death, the funeral.
Chapter 12: Moving On- grieving, the power of family support, forgiveness, valuing elders, alternative therapies, the rewards of Alzheimers cargiving, count your blessings, a time to heal.
Appendix 1: How To Help
About the Author
Sally Callahan was her mothers primary caregiver-surrogate for more than ten years. She is an educator and certified Alzheimers trainer. Sally is a board member of the Alzheimers Association of Cape Cod and the Islands, chairs their Patient and Family Services Committee and runs a support group. Sally works at Massasoit Community College, Brockton, Massachusetts. She lives on Cape Cod.
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