Best Books for Caregivers
From the front lines of care for the aging, these books offer how-to, help, and hope.
By Marcia Z. Nelson
For those whose loved ones develop dementia, life's autumn is a cruel season. Alzheimer's disease is the most common cause of dementia; more than 5 million Americans have it. The Alzheimer's Association estimates that by 2050 between 11 million and 16 million people over age 65 will have the disease, unless effective treatment or prevention is found. For those facing this demanding passage in life, these books offer resources and also the comfort of stories and shared experiences of what happens as family members decline and as caregiving becomes a way of life.
Marcia Z. Nelson, an author and journalist in the Chicago area, specializes in religion and spirituality.
Learning to Speak Alzheimer's: A Groundbreaking Approach
Author Joanne Koenig Coste offers an abundance of useful guidelines for working with dementia in Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease (Houghton Mifflin, 2004), the definitive handbook of resources for caregivers. Coste, a consultant and former head of the Massachusetts chapter of the Alzheimer's Association, speaks from 30 years of personal and professional experience with cognitively impaired aging people. She counsels "living in the patient's world"--following the impaired person's logic as well as you can in order to bring them back gently to reality--to decode speech and to respond to behavior in ways that maximize dignity and minimize frustration.
Nuggets of wisdom: If faced with challenging behaviors, keep a log to look for triggers for the behavior. If you hear words that don't make sense, say, "I'm having trouble understanding." Offer choices: "Would you like coffee or tea?" Often people with memory impairment will remember the last word they heard, and this "last word heard" technique affords the dignity of choosing.
Caring for Mother: A Daughter's Long Goodbye
Virginia Stem Owens makes her way through her mother's dementia over the course of seven years in Caring for Mother: A Daughter's Long Goodbye (Westminster John Knox, 2007). Owens' honesty in this memoir is both painful and lyrical as she seeks to do her daughterly duty, first in caring for her mother at home, since her father cannot manage it, and then faithfully visiting her mother in a nursing home as the older woman slowly declines. Owens writes beautifully what she sees, making sense of what is senseless without sentimentality and sparing nothing, not even herself. Loving people is a burden, but one we must take up, she urges.
Nugget of wisdom: "Having someone to yell at is only one of the advantages of being aware of God at this time. I frankly do not see how people make it through experiences like this without a sense of some sustaining grace upholding them."
Compassionate Caregiving: Practical Help and Spiritual Encouragement
For traditional Christians, Compassionate Caregiving: Practical Help and Spiritual Encouragement (Bethany House, 2007), by Lois D. Knutson, can be one-stop shopping for a comprehensive manual for caregivers. This eminently practical guide contains everything from prayers to lists of equipment to make homes safer for frail elderly or those with dementia. Appendices include a detailed questionnaire to keep track of essential information about someone receiving care. Written by a Christian pastor and chaplain, this book offers much to those who see Jesus as a source of strength for the caregiving journey; but many of the book's resources are nonsectarian and applicable to all.
Nuggets of wisdom: Lower your expectations. Don't strive for perfect holiday celebrations for your family when caregiving takes so much time and energy. Give a caregiver a gift of running errands, or offer to help the patient in their care with snow shoveling, lawn mowing, or paperwork.
My Mother, Your Mother: Embracing 'Slow Medicine'
The new "slow medicine"--spending less time testing patients and more time listening to them, mobilizing an ill person's friends and relatives into a "circle of concern"--has powerful relevance for late life. A shortage of geriatricians may well force radical changes in care for elders. So the perspective of geriatrician Dennis McCullough, author of My Mother, Your Mother: Embracing 'Slow Medicine,' The Compassionate Approach to Caring for Your Aging Loved Ones (Harper Collins, 2008), is all the more valuable. His book is personal and expert. The decline of his own mother is a narrative thread woven into the text. So, too, though in far less detail, is his critical illness, making this Harvard-trained physician a wounded healer.
McCullough presents an eight-part scheme describing stages of physical and mental decline in late life. For all stages, he offers practical, compassionate and family-centered suggestions to maximize quality of life. The health-care system, the aging adult, and the network of caregivers are a triad, and understanding that relationship makes for more resources and less frustration.
Nugget of wisdom: Maintain a loved one's mobility as long as possible. Health requires walking. It's essential for the activities of daily living.
Finding Life in the Land of Alzheimer's
In Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story (Penguin), journalist and writing teacher Lauren Kessler takes a job as a minimum-wage-earning caregiver in an Alzheimer's facility not to expose the facility but rather her own fears. Her own mother had died of the disease, and she writes candidly about "wanting to be a good daughter" and make peace posthumously with her mother. In that quest she cares for, and comes to care about, a dozen souls whose late years are circumscribed by Alzheimer's. The portraits she renders of both residents and their caregivers are vivid and touching. Life in the land of Alzheimer's has no happy ending, but it has dignity, a certain logic, and distilled clarity in what remains of a person's identity.
Nugget of wisdom: "We think there is no communication without words," but that's wrong, Kessler says emphatically. People with Alzheimer's connect with one another and with their caregivers. Touching can be important, music can be very meaningful.
Measure of the Heart: A Father's Alzheimer's, A Daughter's Return
Mary Ellen Geist left her job as a New York radio anchor to anchor her family when her father developed Alzheimer's. Measure of the Heart: A Father's Alzheimer's, A Daughter's Return (Springboard, 2008) is a memoir of Geist's return to her Michigan childhood home. People with Alzheimer's are as individual after the disease takes hold as they were before it. Geist's father Woody loses his cognitive but not his musical abilities. Despite his dementia he is able to join the chorus in which he has sung for decades as they open for the road version of the Radio City Music Hall Rockettes Christmas Show. He whistles around the house as he declines. Music is the motif of the elder Geist's life, and this memoir is an elegiac coda from his loyal and loving daughter.
Nuggets of wisdom: As much as possible, involve the person with Alzheimer's in household chores. Geist's dad made beds, folded laundry, and helped cook. Her recipe for Alzheimer's chicken includes the instruction: "Let the patient chop up the fruits, vegetables and herbs however the hell he or she wants to."
God Knows Caregiving Can Pull You Apart
The virtue of God Knows Caregiving Can Pull You Apart: 12 Ways to Keep It All Together (Sorin, 2002), by Gretchen Thompson, is simplicity. Her list of 12 tips is easy to read, easy to try. Suggestions to pace yourself, watch for hidden blessings, learn to say "no" and other strategies are helpful reminders for caregivers. A Unitarian Universalist minister and chaplain, Thompson offers sympathetic affirmation that caregiving is hard and plenty of encouragement to keep going. Filled with inspirational quotes and stories, some specifically about caregiving and others on overcoming adversity in general, this book is like a comforting cup of hot chocolate or tea. If you're looking for checklists or background facts, other books contain those resources. But if you're looking for the support of fellow travelers along a hard road, this book is a good route to take. Caregiving is a sacrificial way of loving those near to us, she remind us, and love is at the heart of all religions.
Nugget of wisdom: Time away is a necessity for caregivers. Take an imaginary vacation. Spend time planning a trip or looking at pictures or scenes from a place you want to visit. Going there in your mind can provide a psychological break from worry.