Tina Sadarangani, a geriatric nurse practitioner in New York City, has spent years working with older adults and their families. She counsels patients on the medications they should take, the eating habits they should change and the specialists they should see.
But it wasn’t until her own father became seriously ill — requiring a slew of medications, deliveries, physical therapy and more — that she understood the experience from what she calls “the other side of the table.”
Dr. Sadarangani, who has a doctorate in nursing, comes from a family of medical providers. But most of the people who care for loved ones don’t have this expertise.
“If it was this complicated for our family,” Dr. Sadarangani said, “how were people with no medical backgrounds doing this every day in America?”
Resources like books aren’t a panacea, she said. But they can help validate experiences, offer advice and make us feel less alone. Here are five titles, recommended by health care providers and other experts, to help those who help others.
Now in its seventh edition, this 1981 title is full of useful information for anyone caring for people with Alzheimer’s disease or other forms of dementia. It explores a wide variety of challenges that caregivers face, like choosing a health care proxy and dealing with dementia-related behavior changes.
“It’s pretty darn comprehensive,” said Dr. Sadarangani, who is also an assistant professor at the Rory Meyers College of Nursing at New York University. She added that the book doesn’t have to be read in chapter order — you can dip into relevant passages and skip around.
“Every clinician I know who’s read it changed their perspective and how they prescribe treatments to people,” Dr. Sadarangani added. “Every caregiver I know has become more empowered” after reading it, she said.
The former first lady of the United States was a trailblazer in recognizing what caregivers are going through. In this book, first published in 1994, Mrs. Carter offers practical ways to stand up for yourself as a caregiver, said Susy Elder Murphy, the owner of Aging Well Eldercare, a care management business near Washington, D.C.
She reassures caregivers that struggling and feeling exhausted are not personal failures, Dr. Sadarangani said. She also offers tips for dealing with familial relationships and for assigning tasks to people who aren’t local. For example, Ms. Murphy said, you can enlist help from “your brother who lives cross-country.”
In this 2023 title, Ms. Kiper uses case studies from her years as a counselor and a caregiver to get to “the heart of what is so challenging about being in a caregiving relationship,” Ms. Murphy said.
When someone has a neurological disease, we try to figure out the best way to respond to them, she said. But people with dementia can be unpredictable: Lucidity isn’t “a window that’s always open or always shut,” Ms. Murphy said. “It’s constantly opening and shutting.”
Caregivers often end up in an unfamiliar territory that involves learning a new vocabulary, and caring for and negotiating with a person who may be resistant to their help, she said. But this book, Dr. Sadarangani said, validates and normalizes those experiences.
In this 2009 title, Paula Span, a journalist who writes about aging for The New York Times, presents portraits of families who are taking care of older adults. She covers topics that can come up while caregiving, like difficult conversations about whether to move a parent into an assisted-living community or the sibling rivalries that can resurface while caregiving, said Doreen MacAulay, a business professor at the University of South Florida who studies care-taking and household management.
Dr. MacAulay recommends this book to anyone just transitioning into a caretaker role, she said, because the stories can serve as reminders that “burning yourself out is not going to help your loved one in the long run.”
Gail Sheehy shares a personal caregiving journey that began when her husband was diagnosed with cancer and continued for 17 years. But the book, first published in 2010, offers more than a compelling story. “Passages in Caregiving” also highlights eight stages of caregiving (including “shock and mobilization” and what Ms. Sheehy calls “the long good bye”).
Ms. Sheehy’s unflinching portrayal of caregiving can be difficult to read, said Rebecca Axline, a clinical social worker at the neurological institute at Houston Methodist Hospital in Texas. But, she added, it includes “hopefulness that, even in the midst of these heartbreaking moments, we are doing the best we can and honoring the person we love.”
c.2024 The New York Times Company. This article originally appeared in The New York Times.
