By Sam Gaines
Leeza Gibbons needs no introduction. To every American with a television, she’s one of the most recognizable voices and faces. To Alzheimer’s sufferers and their caregivers, she’s a powerful advocate for research, treatment, and especially caregiving. It’s a role she knows well, as one of the caregivers of her beloved mother, the late Jean Gibbons.
Leeza’s advocacy led to the Leeza Gibbons Memory Foundation, from which was launched Leeza’s Place. Both a website for caregivers to learn and share, and a growing nationwide presence of welcoming places for caregivers, Leeza’s Place has become the primary stop for Alzheimer’s caregivers.
In May 2009, Leeza’s new book, Take Your Oxygen First (LaChance Publishing), will debut. Both a collection of memoirs and reflections of Leeza’s family regarding Jean and the entire Gibbons family during the time of caregiving for Jean, as well as an authoritative guide to Alzheimer’s, the new book gives both the science and the personal experiences from Leeza and her extended family that every Alzheimer’s caregiver will benefit from. Leeza coauthored the book with longtime medical collaborators James Huysman, PsyD, LCSW, and Rosemary DeAngelis Laird, MD.
Preserving Your Memory magazine talked to Leeza about her new book and her tireless advocacy for Alzheimer’s caregivers.
PYM: Tell me how Take Your Oxygen First evolved as a project. How did you come up with the title?
LEEZA: I think the phrase will be familiar to anyone who has traveled by airplane. The flight attendant instructs that in the case of an emergency, before you rush to the aid of others you should first put on your own oxygen mask, because if you don’t, chances are that you’ll lose consciousness. Then you, along with those you wish to help, will be in danger. That’s something my family experienced firsthand when my mom was diagnosed, and as my father and siblings and I dealt with her devastating illness. We found that giving care to someone with memory loss is all-consuming. There are days when you truly feel as if you can’t breathe. I watched my Mom disappear behind the veil of Alzheimer’s disease and, for a time, I thought we’d lose my Dad, too. That experience is the genesis of Take Your Oxygen First. We want to help those who are caught up in the seemingly endless demands of caregiving to understand that they need and deserve to maintain their own well-being. It’s the only way to not only give proper care to your loved one who needs you, but to preserve your own spirit, body, mind and, yes, sometimes even your life.
PYM: Whom would you say this book is for?
LEEZA: Take Your Oxygen First is for anyone who is giving care to a loved one with memory loss, as well as their family and friends. When you find yourself in the caregiving role, or when you know someone who is, it can seem almost impossible to find the information and guidance you need to navigate through your new reality. The sense of being overwhelmed can hit hard. Take Your Oxygen First guides you step by step through the process of what to expect so you can take care of yourself while taking care of someone else.
PYM: The book is unique in that it combines your reflections—and those of your family — in providing care for your mom, with a handy AD caregiver’s bible. How did you hit upon the idea of combining the two formats?
LEEZA: It seemed natural, really, because caregiving— especially for a loved one—is such an intensely personal experience. It’s very easy to feel isolated and alone. But there are elements of caregiving that are universal: the deep challenges to mind, body and spirit that caregivers experience; the need for information and support. We wanted to show how our journey with Mom affected every member of our family. We wanted to be honest and real about how lost and helpless we sometimes felt. After all, we are a family like any other, so I think the readers of Take Your Oxygen First will find a voice in its pages that echoes their own concerns. But it’s not just a “personal journey”; as you said, it’s also a “caregiver’s bible.” My family’s personal stories are wrapped around authoritative medical, psychological and spiritual information that we think is vital to the well being of every caregiver.
PYM: From reading your own recollections, it seems your family grew even closer together as you provided care for your Mom. Did it surprise you that this was the case?
LEEZA: We have always been blessed with a warm, close family. What was surprising, though, was how deeply Mom’s AD challenged us a family and as individuals. My father, Carlos Sr., was nearly overwhelmed physically and almost lost his own health as a consequence. We found that individual strengths emerged as we banded together to give care to Mom. For instance, my sister-in-law, Anne Marie, became the organizer who turned Mom’s evolving needs into a plan for care. My sister, Cammy, rescued my father from a poor diet and from the grip of loneliness and depression. It’s sad that there are so many caregivers who don’t have a family support system. Take Your Oxygen First fills that void by providing a roadmap through the experience.
PYM: Take Your Oxygen First is unique also for the contributions your family members make to the book. At what point did this become a “family” project?
LEEZA: That’s easy: from the very beginning, when Mom got her diagnosis of Alzheimer’s disease. She gathered us all together, sat us down, and told us to tackle the challenges head-on. She gave us our marching orders; Take Your Oxygen First represents further steps on that march. We are incredibly blessed that each of us, right down to the grandkids, feels strongly about sharing our story and lighting the path for someone else.
PYM: I wasn’t aware that your grandmother also suffered from AD, with your mom as her caregiver. How do you think your mom’s experience as your grandmother’s caregiver affected your experiences as one of your mom’s caregivers?
LEEZA: It gave us a bit of a head start because in some ways we knew what we would be up against, but we still fell into the trap of denial and waiting too long to begin the process. Looking back, I’m surprised at how much we covered up and kept silent when we knew something was wrong. I imagine Mom’s own experience with her mother was what prompted her to have that family meeting: she’d been there, so she knew what we would be up against. I remember my Mom have so much guilt over her mother’s care. She and her sister had argued and disagreed about what was best. That’s why Mom insisted that we each know what she wanted. It was a beautiful gift. We didn’t ever second-guess… we knew.
PYM: Leeza’s Place has become a major online destination for caregivers, and the Leeza’s Place locations are growing in number as well. Did you foresee this idea catching on so quickly when you co-founded the Leeza Gibbons Memory Foundation?
LEEZA: We knew we had created something that was missing; we basically created what we wished we had while dealing with Mom. The fact that it has caught on so quickly speaks to the great need and the lack of a voice for caregivers. These are the family first responders and they need education, empowerment and energy to deal with a very demanding situation. At Leeza’s Place you can Take Your Oxygen First and breathe, knowing that someone understands; someone who has been there. All caregivers need information and support to help them through their important work. Everyone at Leeza’s Place and the Leeza Gibbons Memory Foundation is proud to be a part of that.
Sharing Your Story
LaChance Publishing is a unique firm in that it specializes in books about caregivers and survivors. Where do these stories come from? From people like you. LaChance published Voices of Alzheimer’s in 2007, which is still available through the company’s bookstore. The publisher is still seeking submissions on several other topics, too. You can share your story at LaChance’s website. Be sure to read the guidelines before submitting.
Visit Leeza’s Place
Want to find out more? A great place to start is Leeza’s Place, which hosts an exhaustive collection of Alzheimer’s and caregiving information materials, as well as a vibrant online community where you can get answers to your questions from staff members and caregivers just like you.
Leeza also has a personal website. There you’ll find her blog, updates on her many charitable activities and a large gallery of photos of her family.
Source: www.ALZinfo.org. Author: Sam Gaines, Preserving Your Memory: The Magazine of Health and Hope; Spring 2009.