Interview with Leeza Gibbons on Caregiving
Alzheimer's disease doesn't discriminate. It strikes men and women, the rich and the poor, the famous and the ordinary. Famous people from Ronald Reagan to Charlton Heston, Rita Hayworth to Norman Rockwell have battled the disease.
TV personality Leeza Gibbons also knows first-hand the shock and potential devastation Alzheimer's can inflict on a family. As host of Entertainment Tonight, and later her own talk show, Leeza Gibbons lived a charmed life, amidst the glitz and glamour of red carpet events and television cameras. But her world was turned upside-down when her grandmother and shortly afterwards, her mother, were both diagnosed with Alzheimer's disease. Leeza's grandmother died several years ago, and her mother, Gloria Jean Gibbons, 72, passed away in May of 2008, after a long and courageous battle with Alzheimer's disease. Gibbons talks about her experience:
AgingCare: Thinking back, what did you learn about Alzheimer's disease that you didn't know?
Leeza: I wish I had known what a marathon this is…battling Alzheimer's disease is an endurance race, the likes of which I could have never imagined. Although people tried to tell me, I suppose I couldn't quite appreciate at the time how valuable everyday is. Little things become so important. I remember marveling at how mom was capable of such amazing victories, such brilliant blessings in life. Whether it's a disease or not, we tend to focus so much on what's next, we forget to be present for what is now. I wish I had known how much I would come to treasure the sight of my mom heading out the door after she had dressed herself, slip on top of her blouse, two mismatched shoes and her purse over her shoulder.
AgingCare: How did your mother cope with her diagnosis?
Leeza: I've always found my mother's courage to be amazing. She truly was a steel magnolia. She faced her disease with all the grace and dignity she could muster day by day. And when she put her head on the pillow at night, I can't imagine how that felt, to fast forward into darkness. She showed me what living was all about, showing up doing the best we can.
AgingCare: Does the family's focus change as the disease progresses?
Leeza: In the beginning, we focused very much on hope and possibilities with my mother. We focused on what she was capable of and how we could enjoy being together. We laughed a lot and I think that's the part of my mom that I miss the most. She approached this disease with humor, heart, dedication and determination, but she was not naïve. She had, after all, seen her mother die the same slow death.
Mom gathered the family around and told all of us the words which were to become incredibly comforting as this disease progressed. She said, "When I kick and scream and call you names, know that is the disease talking. It is not me. And when I no longer recognize that you are my daughters, my son, and my husband then you have to know that is the time that I no longer want to live with you. Leeza, I know you're gonna want to try to fix it, but I don't want to live with you, or your sister or your brother and you're all going to have to help daddy let me go." As a family we reflected on that often. It saved us from the sibling fighting that often occurs where one sibling thinks they know best, or the siblings are trying to move the other parent in a particular direction. We had our marching orders and as difficult as they were, we carried them out.
As mom's disease progressed, the caregiving challenge became hardest for my father. There were dignity issues and boundaries that had to be crossed which are uncomfortable for all families who deal with chronic illness or disability. I worried about dad when mom could no longer express her appreciation or her love but instead lashed out with anger at almost everything. I worried about dad when mom would turn around in the kitchen with a spatula in her hand and start swinging at him. I worried about dad every night when he would go to his room and close the door, knowing we were losing him along with my mother. They were married for 55 years, but Alzheimer's disease stole 10 of them.
AgingCare: Your mother watched her mother struggle with the disease. What was it like for her?
Leeza: I will never forget the day of my granny's funeral. My own mother had just been diagnosed with Alzheimer's disease and she now had to face losing her mom to the thief of memories. We were worried about how much mom could really decipher about the death and dying process. But the cruel reality was she was very lucid as she said goodbye to her mom. The scene that stands out most in my mind was seeing my granny there in an open casket, finally released from this cruel disease, finally peaceful, and there was my mother looking into the eyes of her mother as I stood back and thought about my children watching me. It was an epiphany for me when I realized that the emotion which guided me was stronger than grief. It was the need to create change. I didn't know how, I didn't know when, but somehow I knew that I needed to rewrite the story.
AgingCare: By "re-writing the story," you mean founding Leeza's Place and the Memory Foundation?
Leeza: It's because of my family's experience we created Leeza's Place and that's why we offer free support services to focus on the caregivers. This is not a disease that is content to have just the diagnosed individual, it wants the whole family and it can suck you into a deep dark hole unless you take steps to bolster yourself physically, spiritually and emotionally.
Leeza's Place gives caregivers permission to feel whatever they are experiencing. Then, it gives them a strategy, an approach, a shoulder to cry on, a heart to lean on and the faith that they will make it through. Caregivers often experience so many stress-related challenges. Leeza's Place teaches caregivers to "take your oxygen first," meaning nourish yourself, keep your body strong, take a break, forgive, forgive, forgive…and that is the first step toward caring for your loved one. Once you've become a part of the Leeza's Place community, you're there. You're a part of the family and that includes whether your loved one dies, goes into a skilled nursing setting or whatever…a blanket of support extends in different directions to accommodate whatever reality life throws at you. (Currently, there are eight Leeza's Place locations in Florida, California, Texas and Illinois. More are planned to open in the future. For locations, visit www.leezasplace.org.)
AgingCare: Tell us about some of the programs at Leeza's Place?
Leeza: We do something I love at Leeza's Place called Memory Television. We invite our guests to gather together mementos, souvenirs and other items that are reflective of who they are as a family. It can be anything from a college letter sweater to a Bat Mitzvah invitation, old photographs and record albums and we help them build a set, almost like a TV talk show environment surrounded by these depictions of their lives. Then family members gather together from the littlest to the most senior members and interview each other about their lives. We found that we become so busy immersed in the process of day-to-day life that we forget to tell our family stories. That's what memory television is all about. Seniors talking about the old days, a family farm, a first business, immigrating to America perhaps…it's a chance for the younger members of the family to ask questions in an environment that is safe and supportive. "Why didn't you tell me you were sick?" "Why did we move?" And in the end it's almost like group therapy.
Scrapbooking has been one of our core curriculum from the beginning. It was designed for people with memory disorders. But as we began to do it with our guests, we realized it is an empowering process for everyone involved: caregivers, their diagnosed loves ones, the young and the old. When we take the time to elevate a memory and put it on a page, to write the words of those experiences and feelings, we validate their importance and we cherish those memories over and over. People with memory loss may have trouble remembering yesterday, but when they look at a photograph from 30, 40 or 50 years ago, they can recall every nuance of the scene.
AgingCare: What advice do you have for other caregivers?
Leeza: I believe in early diagnosis for any health challenge. An unnamed enemy has way more power over you than naming it, claiming it and building a plan to deal with the new reality. The fact is with Alzheimer's disease, the sooner you know, the more effective you can be in planning for your care, the more sane the process will be for your caregivers or loved ones and the more effective the meds are. The existing medications work best in the early stages. You are also more likely to be appropriate for research studies.
Again, my advice to get diagnosed early comes from my mother's example. Even though we should have been more educated as a family, we were in a state of denial. It was my mother who gathered us together to show us that she had paid the same household bill three times. She said, "Something is wrong." After she was officially diagnosed, mom was relieved to have a reason behind her behavior. She shared her diagnosis with her friends and the expectation level was lowered. So I feel that for those with the disease, it may be more comforting to know that you don't have to compete at such a high level. This is an individual call. Yes, there were some friends who faded away either out of fear or frustration, but there were so many people who offered steadfast love throughout my mother's decline. They will forever boost my faith.