Top Books for Caregivers
Nearly one in three Americans provide unpaid care for a loved one – from a spouse, to a friend or neighbor – and can be called a caregiver.
Whether caregiver stress is getting you down or you’re simply looking for more information, turn to these bestselling books on caregiving for support, ideas and inspiration.
Who Are the Caregivers?
According to a 2014 survey from the National Alliance for Caregiving and AARP, there are 65.7 million caregivers in the U.S. who provide care to someone who is ill, disabled or aged – nearly a third of the adult population.
Informal senior caregivers come in all shapes and sizes, metaphorically speaking. It could be the neighbor caring for her aging best friend next door, adult children managing care of an older parent from a distance, or a spouse caring for their elderly husband or wife.
About 15 million are caregivers for someone who has Alzheimer’s disease or another form of dementia, and more and more caregivers find themselves in the sandwich generation, caring for an aging relative while also supporting their own children. However, there is something that most caregivers have in common, and that’s the need for support and information on caregiving.
In the same study, 78% of caregivers reported the need for more information and help with caregiving topics. Keeping loved ones safe, managing stress and finding “me time,” and easy activities to do with their care recipient are some of the top concerns for caregivers in the U.S.
Top Books on Caregiving
Not surprisingly, a great book can be an immense source of stress relief for caregivers. “People who take an active, problem-solving approach to caregiving issues are less likely to feel stressed than those who react by worrying or feeling helpless,” reports the U.S. Department of Health and Human Services.
Whether it’s a how-to manual for addressing the most common caregiver issues, or an inspiring personal story that makes the reader feel less alone in his or her struggle, the right book on caregiving can help you feel supported and empowered.
1. “Can’t We Talk About Something More Pleasant?” by Roz Chast
Laughter is a major stress reliever, and in her book, a memoir in cartoons, Chast uses humor and honesty to tackle the day-to-day issues experienced by a caregiver of aging parents. Adult children of senior parents will laugh with recognition as Chast recounts the tribulations of dealing with assisted living, dementia symptoms and other caregiver challenges. For more wisdom from Roz Chast, don’t miss our recent interview with her.
2. “A Bittersweet Season: Caring for Our Aging Parents–and Ourselves” by Jane Gross
This book by former New York Times reporter Jane Gross, is both a personal memoir of caring for aging parents and a how-to primer for navigating elder care in this country, including the daunting tasks of dealing with Medicare and the health care system. However, the most valuable aspect of the book, according to the AARP, is “the writer’s candor, whether it’s admitting to wishful thinking that her mother just hurry up and die, describing her loneliness and emotional pain, or dissecting spats with her brother.”
3. “Caring for Your Parents: The Complete AARP Guide” by Hugh Delehanty and Elinor Ginzler
Ever wondered how other caregivers handle the practicalities of health care, estate planning, assisted living or home safety? If you’re wondering how to better understand the aging process while also taking care of yourself, this book combines honest, expert advice with first-hand stories from caregivers of elderly parents. It also contains a variety of helpful checklists and lists of resources, such as websites and help lines.
4. “The Caregiver’s Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself” by Alexis Abramson
One of the frustrating aspects of being a woman in the “sandwich generation” is feeling underappreciated – feeling like your own needs are not being met while you’re caught in between meeting the needs of both children and aging parents. “The Caregiver’s Survival Handbook” offers practical caregiving information for sandwich-generation women, along with advice on dealing with the emotional challenges of caregiving, like work-life balance and getting help when you need it.
5. “Chicken Soup for the Soul: Family Caregivers: 101 Stories of Love, Sacrifice, and Bonding” by Joan Lunden and Amy Newmark
Reading about the compassion, sacrifice, and perseverance of other caregivers reminds us that we aren’t alone. This inspirational collection co-written by A Place for Mom spokesperson Joan Lunden offers 101 stories of support, love and encouragement for family caregivers of all stripes, including spousal caregivers and sandwich generation caregivers.
6. “The Madwoman in the Volvo: My Year of Raging Hormones” by Sandra Tsing Loh
Ostensibly a memoir about being what Loh calls a “triple-M” – middle-aged mother in menopause – this book also talks about her experiences as a Sandwich Generation caregiver trying to balance her own well-being with the complications of raising kids at the same time she’s taking care of an elderly father with dementia. Loh, a columnist for The Atlantic, tackles the topic with characteristic wit and humor. For more about the book, check out our interview with Loh.
7. “No Saints Around Here: A Caregiver’s Days” by Susan Allen Toth
For a different personal take on caregiving, try “No Saints Around Here,” a memoir which chronicles travel writer Toth’s journey as a caregiver for her spouse. Her husband’s Parkinson’s disease and, over time, his dementia, poses wrenching challenges ranging from loneliness and despair to the inevitable disappearing of the time left with one’s loved one. Practical questions, too, are a part of this story: ensuring nutrition and physical comfort for someone who may resist care.
8. “Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease” Edited by Holly J. Hughes
This collection brings together the work of 100 contributors – “doctors, nurses, social workers, hospice workers, daughters, sons, wives and husbands,” notes the book blurb – who have chosen to confront the topic of Alzheimer’s through personal stories, poems and short prose pieces. Each writer has been touched in some way by the disease, and the range of literary contributions by both formal and informal caregivers is touching and deeply moving.
9. “A Gradual Disappearance” by Elizabeth Lonseth
Christian fiction writer Lonseth has written a book that’s both guide and memoir, equal parts personal stories and practical advice for family caregivers by an experienced family caregiver: both her parents and her parents-in-law were struck with dementia. The book is specifically tailored to caregivers of those with Alzheimer’s, with chapters on topics such as dealing with the initial diagnosis and coping with difficult behaviors. Read a more detailed review on our blog.
Not every parent-child relationship is ideal, and the fact is, many of us will have to face the prospect of caregiving for an aging parent towards whom we might harbor resentment or anger. However, even for those who retain negative memories of childhood, caring for an elderly parent can offer the opportunity to work through – and possibly even leave behind – some of those ongoing issues. This book also offers real-life stories of dealing with emotional conflict in caregiving relationships, exploring how the reader can derive enrichment even from difficult situations.
11. “Inside the Dementia Epidemic: A Daughter’s Memoir” by Martha Stettinius
More than simply a memoir of one woman’s experiences as a sandwich-generation caregiver, this book also lays out the stages of caring for a parent with dementia as her mother progressed from needing home care to requiring more advanced memory care and nursing. Like many writers, for Stettinius, exploring her mother’s story in writing was a form of catharsis, and her story is both touching and educational for family caregivers. APFM’s interview with the author includes an excerpt and some practical tips.
12. “The 36-Hour Day: A Family Guide to Caring for People With Alzheimer’s Disease, Other Dementias, and Memory Loss in Later Life” by Nancy L. Mace and Peter V. Rabins
“The 36-Hour Day” is a go-to guide for family caregivers of a loved one with dementia. It’s got advice about what to expect, how to cope with emotional challenges and difficult behaviors, navigating the financial aspects of health care and locating senior housing. It’s also got a wealth of information about memory loss and dementia itself, including recent research on causes, treatments and stages of dementia.
13. “The Caregiving Wife’s Handbook” by Diana Denholm
Denholm, a psychotherapist who cared for her husband during his battle with cancer and heart disease, profiles the stories of six women in similar situations. Being a spousal caregiver poses a unique set of challenges, from emotional upsets to questions about intimacy. The survival tips and personal anecdotes in this book will help remind spouses that they are not alone, and they can make it through the difficulties of caregiving.
Dealing with siblings and other family members can be complicated at best, and Russo’s book offers advice for dealing with the transitions of aging as a family. Sibling rivalries can add an entirely new dimension to the already-existing problems of caregiving: Who’s going to take charge? What about long-distance caregiving issues? What if one sibling doesn’t want to face end-of-life discussions? U.S. News and World Report recommends this book for “anyone with siblings whose parents are getting older.”
Span is a journalist, and she interviews a range of families as they struggle through the transitions of caring for aging parents. Many face the difficult decision of whether to care for their parents at home or through assisted living, and all of them are searching for answers to common questions about elder care. The solutions they find may not always be perfect, but they work – and that in itself is one of the book’s important lessons.
16. “A Life Forgotten: From the Eyes of the Caregiver” by Judy Thompson
Author Judy Thompson shares, “Alzheimer’s takes more than just the memory; it takes the history of the person. As caregivers to a relative, we go about daily chores forgetting the illness. We move in autopilot and, without thinking, we question why our relative doesn’t remember something or someplace or someone. It’s part of the routine of living. The illness has such subtle signs in the beginning stages and as it progresses slowly we also progress slowly, doing our normal activities and forgetting the disease which is overtaking the mind of our loved one. As the progression becomes more evident, the chores become more difficult, more intense, more cajoling. The game begins but we have to win.”
17. “Why Do You Think I Call You Mama?” by Debbie Keys
Author and caregiver, Debbie Keys, is a daughter caring for her mother with dementia. She hopes to encourage, inspire and provide comic relief to caregivers with her book, which centers around the disease. “I want anyone — especially caregivers and families — who reads this book to feel emotionally validated and comforted,” Keys says. “Why Do You Think I Call You Mama” is an intimate recount of her time spent caregiving and dealing with dementia, but the book also offers some tips and tactics for other caregivers as well.
Have you read any of the caregiving books on this list? What’s your favorite book on caregiving and why? Share your opinion with us in the comments below.
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