Family caregiving comes with a web of emotions, needs, and challenges. In a 2020 study by AARP and the National Alliance for Caregiving, 51 percent of family caregivers said that their role gives them a sense of purpose; however, they also reported feeling alone (21 percent), being under financial strain (20 percent), and having difficulty taking care of their own health (23 percent).
To help you make sense of these complex emotions and the tough questions that may arise during your caregiving journey, here are five books, curated by the team at TheKey. They are an excellent way to get what you need when you need it—be it information, inspiration, advice, or a little levity. No time or energy to read? No problem. We’ve included the top takeaways from each book, so you can benefit from them right away.
Book #1: A Memoir with a Call to Action
Already Toast: Caregiving and Burnout in America, by Kate Washington
What it covers: Washington paints a picture of the toll caregiving takes on Americans through the lens of her own experience caring for her husband after he is diagnosed with cancer. She feels suffocated by the high-stress demands of around-the-clock care while parenting two young daughters and yearning for her writing career, individuality, and intimacy. Washington uses detailed research to illustrate the conflicts that caregivers experience to stay afloat, and she makes a strong case for legislative change to support this vital role.
Why it’s a good choice for family caregivers: Washington reveals her darkest thoughts when her day-to-day realities as a caregiver build a wall between her and the outside world as well as between her and her husband. She helps family caregivers, who may feel alone, see that they are part of a broken healthcare system that relies on them but also typically offers zero training, support, or pay. “It doesn’t help anyone if thousands, or even millions, of us are all struggling alone,” she writes. “We have to raise our voices, together, about how hard it is.”
The takeaway: Washington stresses the importance of intentionally taking self-care measures. She credits her membership in an online writing workshop with keeping her passion alive. Her advice: Carve out space for yourself (whatever that might look like for you). Ask for and accept help from friends to foster community and assist in easing the load. Also, check out Washington’s list of caregiver resources and playlist for hard times.
Book #2: A New Way to Care for a Loved One with Dementia That Sparks Joy
Creative Care: A Revolutionary Approach to Dementia and Elder Care, by Anne Basting, PhD
What it covers: Dr. Basting, the founder of the nonprofit TimeSlips and a MacArthur Genius Grant recipient, uses a research-backed method for interacting with older adults with dementia that borrows directly from improvisational theater. She asks family caregivers to encourage loved ones to share ideas (fact or fiction) and then build on them to craft a story together. Dr. Basting shows how this imaginative approach leads to meaningful connections with aging loved ones, and how on a larger scale, it can be used to transform care communities into places where residents develop scripts and even participate in productions!
Why it’s a good choice for family caregivers: Dr. Basting’s theatrical approach helps shift the focus from the losses that can accompany aging and dementia to creating new, joint experiences that are lighthearted and meaningful. Using real-world examples and suggestions, she illustrates how to help loved ones feel heard, which can foster a deeper bond between you.
The takeaway: When communicating with loved ones living with memory loss, our instinct is often to correct facts, which can lead to tension. Instead of saying, “No, the truth is,” try saying “Yes, and,” which encourages the person to continue. For instance, show your loved one a photo and ask them what they see. If their story doesn’t make sense, go with it. Repeat what they say and ask for more, almost as if you are creating a screenplay together. Other fun things you can do together: Make colorful drawings to send to troops overseas, collaborate on a recipe and take it to a neighbor, or listen and dance to music together.
Book #3: An Invitation to Laugh and Cry—at the Same Time
Can’t We Talk About Something More Pleasant? by Roz Chast
What it covers: This award-winning graphic memoir—a #1 best seller—uses cartoons, photos, and handwritten narrative to tell the story of an only child as she manages the challenges of her elderly parents. Chast, whose cartoons have appeared in The New Yorker since 1978, uses her signature wit to illustrate her long-distance care struggles when her father begins to decline with dementia and her domineering mother faces health setbacks. Ultimately, Chast helps them move out of their home and into an assisted-living facility—and make peace with the realities of a difficult mother who lives to be 97.
Why it’s a good choice for family caregivers: The book provides comic relief and heart-wrenching camaraderie for adult children dealing with elderly parents who 1) don’t necessarily want to be cared for, and 2) often drive you insane. Cartoon bubbles are the perfect avenue for expressing all of the competing thoughts swirling around in the mind of a family caregiver—bringing levity to difficult circumstances.
The takeaway: Chast normalizes the mixed emotions of the adult caregiver. She is honest about the guilt, anxiety, and self-doubt she faces in figuring out the “right” steps to help her (not-so-appreciative) parents, all while trying to live her life and raise her own children. From pleading over the phone with her mom not to drive after cataract surgery to agonizing over money worries, she helps caregivers feel understood, and simultaneously, makes them laugh.
Book #4: The Definitive Caregiving Guide for People with Dementia
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias, by Nancy L. Mace and Peter V. Rabins, MD
What it covers: This comprehensive book is to family caregivers what What to Expect When You’re Expecting is to pregnant couples. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer’s, and other dementias at Johns Hopkins University School of Medicine, this A-to-Z guide (a best seller in print for more than 40 years!) is now updated in its seventh edition. It is packed with tips, techniques, and advice for caregivers at all stages of the care journey.
Why it’s a good choice: Whether your loved one was recently diagnosed with dementia or is in the later stages of the disease, this book makes it easy to find and flip to the relevant pages whenever a specific issue, such as combativeness, comes up. Throughout, the authors provide support for the caregiver by explaining the mechanisms behind your loved one’s behaviours, providing step-by-step guidance on what to do, and helping you to think ahead.
The takeaway: It’s critical that you allow yourself to accept help from family and friends—and hire a caregiver if possible. The book acknowledges that no one is going to care for your loved one exactly like you do, and that’s okay. “Taking time out, away from the care of the person who has dementia, is one of the single-most important things that you can do to make it possible for you to continue to care for them,” according to the authors.
Book #5: A Deep Dive into the History and Science Behind Alzheimer’s
The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It, by Jason Karlawish, MD
What it covers: Dr. Karlawish, a geriatrician and co-director of the Penn Memory Center at the University of Pennsylvania, was inspired to write this book after listening to a caregiver whose husband had Alzheimer’s tell their story. Fighting the urge to sob, “I decided I need to make sense of this emotion,” he writes. The result: A look at the history, politics, research, and controversies surrounding the disease dating back to its recognition in 1906. Through compelling storytelling, Dr. Karlawish also invites readers into the personal experiences of his patients and their caregivers and hints at what we hope to know about the disease in the future.
Why it’s a good choice for family caregivers: This book gives caregivers VIP access to an Alzheimer’s insider who has experienced the disease from the perspective of a student, clinician, researcher, colleague, and family member. If you’ve ever wanted to look your loved one’s doctor in the eye and say, “How could there not be a cure?” the book is a blueprint you can use to start such a dialogue.
The takeaway: Behavioural interventions can be the best medicine. Studies show they offer improvements in measures of health, well-being, and satisfaction for both patients and their caregivers. Enrolling your loved one in an adult day care program may be a more effective way to calm their agitation than a prescription for medication, he points out. At home, come up with activities you can do together, from going to a concert to making lunch or taking a walk. Then, follow through with one of the activities at least once a week, even if your loved one is reluctant. You will both benefit.
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