Recommended Reading

Taking Care of Aging Family Members, by Wendy Lustbader and Nancy R. Hooyman, The Free Press, 1994. Billed as a "Practical Guide", this book is just that.  The authors anticipate all the logistical and emotional surpises and traps that family members can get caught in.  There are many charts, additional reading lists, and instructive sub-headings in each chapter.  (The cost numbers are outdated, but if you double them, they are about right.)

The Eldercare Handbook: Difficult Choices, Compassionate Solutions, by Sheila Mora Henry. Harper Collins, 2006. This is a comprehensive and clear guide designed to help family members understand the issues around providing care to aging parents. The author is an RN who draws on both her years of experience as a nursing home administrator, and her own work to caring for two parents with Alzheimer’s Disease. Henry starts at the beginning of the disease, when family members feel that “something is wrong” and carefully explains all of the steps and many of the systems that caregivers will encounter along the way. This is an excellent “how-to” book for families facing the task of caring for an elder.

Circles of Care: How to Set Up Quality Home Care for Our Elders, by Ann Cason, Shambhala Publications, 2001.  A step by step instruction on how to set up in-home care, filled with true to life examples, warmth, and humor. Cason recognizes that every individual who comes in contact with an elder, whether it’s the postman or the physician, is part of the circle of care. There topics range from how to assemble a care team to how to give a sponge bath, from how to deal with difficult behaviors to how to let go at the time of death.

The Hard Questions for Adult Children and Their Aging Parents, by Susan Piver, Gotham Books, 2004.  100 questions ranging from the practical – do you have a will? – to the emotional – is there anything you want to be remembered for? – for both adult children and parents to ask themselves and each other. In workbook form, with room to write in the answers, this deceptively simple and easy to use book has a depth of understanding and compassion that helps families face these issues with gentleness and courage.

Caring for Your Parents: The Complete AARP Guide, by Hugh Delehanty and Elinor Ginzler, AARP Books/Sterling Publishing Co., Inc, 2005.  This book is a good resource guide for adult children. Many issues are covered including the Medicare maze, choosing a geriatric care manager, and most important ~ taking care of the Caregiver. The first section has some excellent tips on managing family relationships, working out issues with siblings, and ideas on how to talk to your parents.

The Majesty of Your Loving: A Couple’s Journey Through Alzheimer’s, by Olivia Ames Hoblitzelle, Green Mountain Books, 2008. In this wise and thoughtful book, Mrs. Hoblitzelle invites the reader to accompany her and her husband as they experience the changes brought about by his Alzheimer’s disease. The author strives, throughout the book, to present the losses and challenges of AD from her husband’s point of view, in a way not often seen in a book of this type. She looks clearly at the issues with a compassion that is both helpful and hopeful to others caring for those with a dementing illness.

Learning to Speak Alzheimer’s, by Joanne Koenig Coste, Houghton Mifflin Company, 2003.  This a great, readable book for professionals and family members alike. Written in everyday language, the book is filled with practical advice and suggestions for making the world of people with Alzheimer’s, and their caregivers more manageable. Koenig Coste advocates for the habilitation model, focusing on positive interactions, capabilities, and successes rather than the frustrations and burden of caregiving.

Still Alice, a novel by Lisa Genova, Simon & Shuster, 2009. Ms. Genova, a Harvard-educated neuroscientist living in Massachusetts, centers her story on Alice Howland, a Harvard professor who develops Alzheimer’s disease while only 50 years old. Though the book is fiction, Ms. Genova describes the changes and losses of Alzheimer’s from Alice’s point of view. Through her, the reader is able to understand very clearly what it must be like to live inside the disease at different stages.  Ms. Genova has created a wonderfully moving story with characters we come to love and care about. Though everyone familiar with Alzheimer’s disease knows the end of this particular story, by the end of the novel, the reader understands that people living with this disease can add much to the lives of those who remain behind.

Brain and Behavior, Coping with Parkinson's Disease, by Joseph H. Friedman, MD, Demos Health, 2008  An expertly written and very readable book which highlights the cognitive and behavioral challenges of Parkinson's disease which are so challenging for families. Includes current scientific information as well as practical approaches.

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