LESSONS LEARNED... WISDOM TO SHARE
Leeza Gibbons opens up about her mom's Alzheimer's in a new book.
BY:SCOTT BARWICK
Caring Today: Could you explain the meaning of Take Your Oxygen First, the title of your new book?
Leeza Gibbons: This is our rallying cry for caregivers! Anyone who has traveled by airplane has heard this phrase during the pre-flight instructions, when the flight attendants explain the use of the emergency oxygen masks. If you're traveling with a young child or an elderly person, your natural reaction is to make sure he or she is safe first, before you help yourself. But if you ignore your own need for oxygen, there is a good chance you may be unable to help your loved one and you may put both yourself and your loved one in danger of serious injury or worse. The meaning of these instructions then becomes crystal clear: If you don't take care of yourself first, you'll be unable to care for your loved ones in their time of need.
CT: With the mix of personal anecdotes and easy-to-understand facts, the book is sort of a crash course in caregiving. Was that the intent?
LG: I like to think of it as boot camp for your soul. The book is a distillation of the most important lessons about caregiving my family and I learned the hard way while taking care of our mom. We give readers the basic facts about [Alzheimer's] that my wonderful co-authors, James Huysman, PsyD, LCSW and Rosemary DeAngelis Laird, MD, felt that every caregiver needed to know-to keep healthy for what might be a decade or more of giving care.
CT: Did you have a resource like this during the time you cared for your own mother?
LG: When Mom became ill, everyone in the family took on the tasks of caregiving that best suited them. My wonderful sister-in-law Anne Marie's great strength is as a researcher, and she was tireless in trying to find out as much as she could. But as she tells in the book, she found that it was difficult to find reliable, relatable information available about Alzheimer's, and almost none about how to stay strong while caring for a loved one. Even today, from our experience running Leeza's Place, [see below] we found that there was no one resource that a caregiver could turn to.
CT: Was writing the book a cathartic experience?
LG: Writing the book was therapeutic in many ways. The words make it real and allow you time to experience the emotions as you retell the story of your journey. The book also was a beautiful opportunity for all the members of our family to contribute what they know and how they felt. I was especially proud of my father and his ability to pass on great tips and advice.
CT: Was there one specific incident where you just knew something was wrong with your mother?
LG: When Mom first became ill, we all went to that safe place called "denial." The truth is, all of us had first-hand knowledge of Alzheimer's because it was what took my Granny's life. Still, we were confused by what we were seeing when Mom began to show symptoms.
I think the first incident was when my Dad told us that Mom, who was in charge of paying all of the household bills, confessed that she had paid the same bill three times. After that, we all began noticing things about her that just "weren't Mom," such as her repeating things over and over, and sometimes being unkind to one family member or another-this from a woman who had never said an unkind thing in her life! That was the beginning of a long journey with Mom, a journey she had bravely joined before the rest of us were ready. Without her insistence that "something was wrong," we probably would have covered for her and lied to ourselves much longer.
CT: You were living 3,000 miles away. Many caregivers feel guilt over that kind of situation. Did you?
LG: Sure I was guilty. In my family, I am the "doer." If there is a problem, I am usually the one who gets things moving and keeps pushing. But I got so focused on trying to find ways to "fix" Mom, I missed many days appreciating where she was "right now." It was hard for me to keep up. I remember so many times when Cammy, my sister, the one who took on the day-to-day job of taking care of Mom, would call and just break my heart retelling the events of the day. She was on the front lines with my Dad. They were our family's "first responders," and I wasn't there. I felt so powerless.
CT: As well as a daughter and sister, you're also a wife and mother. And, you were working. How did you manage all those roles, and what suffered?
LG: It was almost impossible to find the middle of the see-saw. Every day I felt as if I were failing, like I was always letting someone down-most importantly, myself. I got so depleted and so stressed that my family suffered and my work suffered. I think being sleep-deprived was one of the most difficult aspects of my struggle. The less sleep I got the less I could cope. I tried to do it all myself and got resentful at times.
I found that with serious illness, your bubble of domestic bliss is not immune, nor is your career. My anxiety spread to every aspect of my life, and as much as I tried to present a facade of calm and acceptance, my persona never lasted past my driveway. Once home, I became as tightly wound as an angry fist. I snapped at the kids, withdrew from my husband and stayed up until dawn searching for the latest treatments, the slimmest hope.
As Mom declined, I felt trapped on a tilt-a-whirl of emotion.
When I was hosting the nightly entertainment news magazine, Extra, I was all coifed and poised in front of the camera as I delivered the latest celebrity headlines. But the minute the lights went out on the stage, I fell apart. I spent most afternoons leaving through the back door of the lot to wander the neighborhood streets trying to reclaim some control over myself. But bad news can't be controlled, and I realized that I was no match for its increasing shadow over my life. I am so thankful that I could turn to others to help me get through it all.
CT: As a caregiver, it's physically and emotionally important to take time for yourself. What did you do?
LG: I tried to give myself the first five and last five minutes of each day. I know that sounds like a pitifully small amount, but you'd be surprised by how many caregivers don't even have themselves on the list at all! Walking, walking and more walking provided me many sane moments among weeks of chaos. I would often take a digital recorder and just pour my thoughts into it. I also got purposeful about meditation. It is only when we are quiet that the answers can come in.
Mom used to always tell me, "When your brain is tired, move your body." I tried to do that. Even if I would just stand up behind my desk and do 25 toe touches, or run the stairs outside my home for five minutes, there is something about physical exertion that makes us feel more capable in all areas. Music also worked for me. I played it loud and always sang along! Sometimes the lyrics made me cry, sometimes they lifted my spirit and gave me energy and hope.
CT: What was the most surprising source of support for you?
LG: My young son, Nathan, 10 at the time, always seemed to sense what I was feeling. He would often offer me one of his stuffed animals to sleep with, or remind me that "a heart never forgets."
CT: What did you find out most about yourself?
LG: I found that this really brought home to me the fact that everyone has sole custody of their lives, so they need to step up and own it. This usually means that one has to reinvent oneself constantly. And one needs to be able to stretch and bend with everything that life throws at you, otherwise there's a good chance that you will break.
CT: Do you think caregiving is being acknowledged and supported as it should be in this country?
LG: Unfortunately, the conditions facing caregivers are, in my opinion, the least acknowledged and least supported problems in this country, despite the fact that over 50 million Americans are in some way giving care on a daily basis to someone they love. One thing is for sure, it's tough to understand the physical, emotional and spiritual burden carried by caregivers until you are there. I think, though, we are on the verge of giving a powerful voice to caregivers-a voice that is vibrant and strong, brave and empowered.
CT: What is your best advice for a caregiver?
LG: If there is one thing I want our readers to take away from our book, it is our message of hope. For those who are just starting out on the journey of caring for a loved one, the future can seem very bleak. And for those already caught up in the tremendous burdens that are a part of this journey, seeing that light at the end of the tunnel can seem all but impossible. But the act of giving care can actually be a life-sustaining and empowering experience for them, for their families and for their loved one. You are not alone, and with help, you will find answers that can save your sanity and your serenity!
LEEZA ON LEEZA'S PLACE
Leeza's place, the name for the community centers run by the Leeza Gibbons Memory Foundation, grew out of my family's experience early in Mom's disease. We found that there was no place a caregiver could turn to for support, for information and for a sense of community. Leeza's Place serves as an emotional oasis for caregivers who need a place to stop and take a breather from their busy lives, to figure out where they stand and where they are headed, and where caregivers can connect to the resources that are vital to the physical, emotional and spiritual support of their loved ones and themselves.
Learn more about Leeza’s Place at www.leezasplace.org