Resources: Experiences of caregiving

For Spousal Caregivers

The Caregiving Wife’s Handbook by Diana Denholm. As a psychotherapist and a wife who spent most of her marriage caring for a husband with cancer and congestive heart failure, Denholm offers practical advice for dealing with the range of emotions that face spousal caregivers. (See Denholm’s Next Avenue columns on how caregivers can restore intimacy with their partners and handle the challenge of in-laws.)

Passages in Caregiving: Turning Chaos Into Confidence by Gail Sheehy. Writing of her journey caring for her husband, who died of cancer, the social anthropologist and best-selling author leads us through the emotional caregiving passages of a fragmented health care system. (Also of note: In Sickness as in Health by Barbara Kivowitz and Roanne Weisman, who have produced a thorough guide to the complexities of spousal caregiving.)

(MORE: For Caregivers of Spouses With Dementia, a Redefinition of Marriage)

I Still Do: Loving and Living With Alzheimer’s by Judith Fox. In this beautiful collection of her photographs of her husband, whom she has cared for during his decline from Alzheimer’s, Fox captures, in words and pictures, the emotional spectrum of seeing a loved one live with dementia. (Learn more about Fox’s project from NPR.)

For Alzheimer’s Caregivers  

The Shriver Report: A Woman’s Nation Takes on Alzheimer’s by Maria Shriver with the Alzheimer’s Association. This is a comprehensive view of the impact of Alzheimer’s disease, including research, resources and primers on workplace, gender, diversity and policy issues, all highlighting the growing impact of the epidemic in America.

The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses and Memory Loss in Later Life by Nancy Mace and Peter Rabins. A valuable guide to what to expect and how to cope.

Dr. Ruth’s Guide for the Alzheimer’s Caregiver: How to Care for Your Loved One Without Getting Overwhelmed … and Without Doing It All Yourself by Dr. Ruth Westheimer with Pierre A. Lehu. From the country’s best-known name in relationship therapy comes a thorough look at caring for someone with dementia, including advice on avoiding burnout, managing challenging behaviors, resolving family disputes and more.

Still Alice by Lisa Genova. After reading this heartbreaking novel about a 50-year-old wife, mother and Harvard professor facing the diagnosis of early onset Alzheimer’s, you’ll never look at the disease the same way again.

For Caregiving Inspiration

Chicken Soup for the Soul: Family Caregivers edited by Joan Lunden and Amy Newmark. You’re not alone, and here’s proof: 101 stories to inspire you on your journey, from those who have lived through it.

For Caregivers With Siblings

They’re Your Parents, Too!: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy by Francine Russo. The journalist who once covered the boomer beat for Time magazine highlights the stress and strife that can arise when siblings do not agree on how to care for aging parents. (See Russo’s pieces for Next Avenue about how to let go of entrenched family roles and the lessons she learned from her mother’s death.)

(MORE: The Sibling Caregiver)

For Sharing With Kids

And They Still Bloom: A Family’s Journey of Loss and Healing by Amy Rovere. In this novel for families published by the American Cancer Society, 7- and 10-year-old siblings deal with the death of their mother from cancer, just as the author did when she was 9. 

The Memory Box by Mary Bahr and David Cunningham. This clear and comforting book for kids age 5 to 8 is told from the perspective of a grandfather with Alzheimer’s who is building a memory box with his grandson filled with mementos of all the good times they have shared.

What’s Happening to Grandpa? by Maria Shriver and Sandra Speidel. Shriver’s book is the best I’ve seen for helping young children understand the impact of cognitive impairment. It tells of a young girl who realizes her grandfather has a problem when he begins repeating the same stories over and over, then tries to find a way to help.

For a Humorous Perspective

What’s So Funny About … Heart Disease? by Karyn Buxman. Finding the elusive funny side of chronic illness and caregiving, this is just one entry in a series of admirable What’s So Funny About… books by Buxman, a self-described “neuro-humorist.”

(MORE: Why Laughter Is Crucial for Caregivers)

You’d Better Not Die or I’ll Kill You: A Caregiver’s Survival Guide to Keeping You in Good Health and Good Spirits by Jane Heller. Caring for an ill spouse is never easy, but Heller, with help from some celebrity friends and caregiving experts, successfully chronicles the lighter side of the 20 years she has spent caring for her husband, who has severe Crohn’s disease. (See Heller’s columns for Next Avenue about those times when laughter is the only medicine and what to do when someone you love becomes someone else.)

For the Male Perspective

Family Meals: Coming Together to Care for an Aging Parent by Michael Tucker. The writer and actor provides a witty and poignant look at the journey he is taking with his wife (and former L.A. Law co-star) Jill Eikenberry as they jointly care for her mother, who has dementia.

Not My Boy!: A Father, a Son, and One Family’s Journey With Autism by Rodney Peete. The former NFL quarterback, whose wife is actress and caregiving activist Holly Robinson Peete, relates how he has learned to cope with the “new normal” of raising a special needs child.

Contemplative Caregiving

Circles of Care, by Ann Cason.  Mindfulness is key, Ann Cason writes. Good care begins with watching and listening, with entering the elder’s world and accepting it. Drawing on decades of experience in caring for the elderly, Cason helps us understand how old age feels and how we can help.

Then, through exercises, care studies, and numerous examples and suggestions, Circles of Care shows how to: work out a care plan, assemble a care team, plan nutrition, improve personal care, avoid caregiver burnout, and work with conflict.

Awake at the Bedside: Contemplative Teachings on Palliative and End-of-Life Care by Koshin Paley Ellison.  Pioneers in the field of palliative and end-of-life care, poets, chaplains, doctors and Buddhist teachers offer their wisdom about death and dying, the compassionate relationships encountered as a caregivers.  Manual, spiritual testimony, personal stories and inspiration provide an excellent resource for caregivers.

The Warriorship of Caregiving

Ten Thousand Joys Ten Thousand Sorrows; A Couple’s Journey Through Alzheimer’s by Olivia Ames Hoblitzelle. Also first published AS The Majesty of Your Loving (both available on Amazon). Olivia is such a fine writer. She takes you into her world of caring for her husband who has Alzheimer’s and shares wisdom hard to find in any environment. For instance, how to help shift his difficult moment of loss or confusion into something lighter. Or how to treat all that happens as fresh and new beyond the preconceptions we carry. Every page of this book is a treasure of practical wisdom.

Patrimony; A True Story by Philip Roth. This book is a powerful presentation of the transmission of family through the path of caregiving. It is a relentless description of the wisdom that comes from the bravery to go beyond what you thought you could do or feel or be.

Caregiving as Walking in Another’s Moccasins

Memento Mori by Muriel Spark. This novel will change your mind about the possibilities of aging.

On Overgrown Paths by Knut Hamsun. Written when he was in his 90’s as an attempt to prove that he was sound of mind; it shows a state of mind of old age familiar for those of us who pay attention.

Books to Enrich the Lives of Caregivers

A Cast of Caregivers: Celebrity Stories to Help You Prepare to Care by Sherri Snelling. A hat trick for caregiving readers that includes inspirational celebrity stories (from Marg Helgenberger, Alan and David Osmond, Sylvia Mackey, Alana Stewart, Tucker and Eikenberry, Lunden and the Peetes); a comprehensive guide to “what to expect when you’re caregiving” and a section dedicated to helping anyone in the role take good care of themselves, too.

The Art of War; by Sun Tzu, The Denma Translation. Of all books this is the most appropriate for developing the self knowledge to work with conflict in a way that benefits the whole family and the society.

Enlightened by Design: Using Contemplative Wisdom to Bring Peace, Wealth, Warmth, And Energy Into Your Home. By Helen Berliner Excellent suggestions for working with environment when aging or caring for a loved one.

When Things Fall Apart by Pema Chodron

The Sanity we are Born With by ChögyamTrungpa

Shambhala, the Sacred Path of the Warrior by Chögyam Trungpa

Ruling Your World by Sakyong Mipham

The Shambhala Principle by Sakyong Mipham

From Sally Abrahms, AARP Consultant

Support

This project was supported in part by The Shambhala Trust. You, too, can help by making a tax-deductable donation here. We gratefully acknowledge many contributions, written, artistic and financial.
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