A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard

A compelling book that honestly acknowledges the struggles family caregivers face every day, Suzanne Geffen Mintz’s A Family Caregiver Speaks Up (2007) has been recognized as perhaps the best starting place for those new to this challenging role.

However, this updated version of Love, Honor & Value (2002) by the president and co-founder of the National Family Caregivers Association (NFCA) will also resonate with those who have been caregiving for years. The author describes a journey shared by her and husband Steven that has been unpredictable, rewarding, scary, sad, funny. Above all, it's been a personal triumph not only over extraordinarily difficult personal circumstances, but also those emotions so familiar to family caregivers: depression and despair.

Thirty-four years ago, Mintz’s husband Steven was diagnosed with multiple sclerosis (MS), a disease in which progression and symptoms vary from person to person, making day-to-day life difficult to plan and the future impossible to foretell. 

For example, Mintz details her frustration when Steven needed a wheelchair much earlier than they’d expected. She also shares how pervasive her caretaker persona had become when, during one terrible night when Steven was gone, a stranger broke into her house and raped her. Obviously traumatized by the rape itself, one of her first thoughts was nevertheless how much worse it could’ve been had Steven been home.

Violation, Separation
However, the aftermath of the rape resulted in a sense of violation felt by both of them, an emotion that served to separate them, rather than bind them together. They found it difficult to confide in each other, choosing to tiptoe around their issues, rather than face them head-on together. A two-year separation ensued, ending only when the two of them finally realized that they were, as Mintz puts it, “quite right for each other.”

Like so many caregivers who find themselves supporting a loved one, Mintz has come to terms with her husband’s disability but still clearly acknowledges the challenges inherent in caregiving as a full-time job. What she found in those early years was that the opportunity to share with other caregivers – to compare notes and share solutions and advocate together – was just the sustaining source of strength she needed to deal with her new reality. That realization drove her to found the internationally recognized National Family Caregivers Association (NFCA), and subsequently to write this book.

The National Family Caregivers Association
According to A Family Caregiver Speaks Up, the NFCA was founded in 1993 with a mission “to empower family caregivers to act on behalf of themselves and their loved ones and remove barriers to health and wellbeing.”  Essentially, the organization lets other caregivers know that it’s okay to ask questions and to cry and to ask for help.

Mintz’s book is, in fact, a culmination of those honest sentiments, offering advice based on her own experiences and those of others throughout the book. Separate chapters cover “The Common Bonds of Caregiving,”“ It Doesn’t Have to be This Hard,” “Caregiving is About Love, Honor, Value—and You,” among other topics central to caregiving. Four appendices – healthcare, finances, public policy, and finding resources – conclude the book.

A Family Caregiver Speaks Up allows anyone in the role of family caregiver to find solidarity and support in the experiences of others. The NFCA has a vision of  “an America in which family caregivers lead full and productive lives, free from depression, pain, isolation, and financial distress.” Indeed, with this book and the advocacy work Ms. Mintz has engaged in tirelessly through NFCA, she is well on her way to fulfilling that vision.

A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard
Suzanne Geffen Mintz
Capital Books, Inc. (2007)
ISBN 978-1-933102-46-7

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To read more about Suzanne Mintz, see Family Caregiver Suzanne Mintz Uses Life Experience to Advocate for Caregivers.

For more information about caregiving, see Caregiver Basics and Resources: What You Need to Know.