Talking With Leeza Gibbons: Providing Support for Alzheimer’s Caregivers
What I Wish I’d Known About Time and Alzheimer’s: Television Host Leeza Gibbons
Being the host of “Entertainment Tonight” for ten years taught Leeza Gibbons how to fill time on TV. Being an Alzheimer’s caregiver taught her how to make time count.
Most people know Leeza Gibbons from her ten years as host of the TV tabloid Entertainment Tonight, or her six years on the daytime talk show Leeza. But a growing number are beginning to know her for her efforts on behalf of those dealing with Alzheimer’s disease, which grew out of her own family’s experience.
To anyone familiar with Leeza’s Places, her rest-and-reenergize stations for Alzheimer’s families, the story is familiar: Gibbons’s mother, Gloria Jean, was diagnosed with Alzheimer’s in 1999 — after witnessing her own mother’s long struggle with the disease. Knowing only too well what lay ahead for her, Gloria Jean Dyson Gibbons gathered her family to give them instructions for coping as her disease progressed. She urged her daughter to “tell this story and make it count.”
Leeza Gibbons did more than tell her mother’s story. As Muhammad Ali and Michael J. Fox did for Parkinson’s disease, she began her own organization to raise Alzheimer’s awarenessand provide support for caregivers.
In 2002, she founded the Leeza Gibbons Memory Foundation, dedicated to improving Alzheimer’s care and finding a cure. Its signature program, Leeza’s Place, is a kind of oasis for caregivers and recently diagnosed family members, providing mentors, classes in “confident caregiving,” tai chi and massage, and intergenerational activities to strengthen family bonds. There are also workshops in preserving memories through scrapbooking, a favorite Gibbons pastime (she has written two books about it that are available on the site).
Many people try to keep themselves busy to get their minds off a loved one’s slow death. Gibbons found herself expanding her philanthropic enterprise as her mother’s condition worsened.
“I find that my desire to use my mother’s spirit and energy to help others has grown stronger as she slips further away,” she said earlier this year. In just six years, her group has opened nine Leeza’s Places across the country — in California, Texas, Illinois, New York, and Florida.
In 2005, Gibbons received the annual Public Leadership in Neurology Award from the American Academy of Neurology, and last year she was named to the oversight committee of California’s stem-cell research agency.
Gloria Jean Gibbons died in May 2008, at the age of 72, nine years after her diagnosis. Leeza Gibbons talked to Caring.com about her mother’s relief when she was diagnosed, her instructions to her family, and what Leeza’s Place offers caregivers.
You often emphasize early diagnosis for Alzheimer’s patients. Some families feel that there’s nothing they can do about Alzheimer’s, so why find out sooner? Why do you think an early diagnosis is important?
I believe in early diagnosis for any health challenge. An unnamed enemy has way more power over you than if you name it, claim it, and build a plan to deal with the new reality.
The fact is that 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’re also more likely to be eligible 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.”
Do you think it was psychologically helpful to her to get the diagnosis?
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. It’s no secret that we are almost phobic about aging in our culture. Add to that people who need some sort of support — like wheelchairs, crutches, or canes — and we often find barriers to relationships.
Yes, there were some friends who faded away 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.
What was it like when you first realized that your mother didn’t recognize you?
I remember being home in my mother’s house in South Carolina, helping her make the bed, and she was watching my every movement closely and trying to mirror what I was doing. Then she stopped and looked at me, and I said, “What’s the matter, Mom?”
She said, “You’re a very nice lady. How do I know you?” And I just smiled and said, “You know me because today I’m your daughter, yesterday I was your daughter, and I’ll always be your daughter.” And she said, “Oh.”
Your mother was diagnosed with Alzheimer’s at about the time her mother died from it. How did she face the disease with such intimate knowledge of what she would experience as it progressed?
I will never forget the day of my granny’s funeral. My mother had just been diagnosed with Alzheimer’s, and she now had to face losing her own 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 that she was very lucid as she said good-bye 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 her mother’s face. I stood back and thought about my children watching me.
It was an epiphany for me when I realized that the emotion that guided me was stronger thangrief. 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.
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. She showed me what living was all about: showing up and doing the best we can.
What do you wish you had known about being an Alzheimer’s caregiver when you were going through the experience?
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 every day is. Whether someone in the family is suffering from a disease or not, we tend to focus so much on what’s next that we forget to be present for what is now.
Little things become so important. I remember marveling at how Mom was capable of such amazing victories, such brilliant blessings in life. I wish I had known how much I would come to treasure the sight of her heading out the door after she had dressed herself, slip on top of her blouse, two mismatched shoes, and her purse over her shoulder.
How did your family’s caregiving change as her disease progressed?
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 wasn’t naive. She had, after all, seen her mother die the same slow death. Mom gathered the family around and told all of us the words that 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’s not me. And when I no longer know 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 going to 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 internal 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.
Is that why you made caregiver support such an important part of Leeza’s Place?
It’s because of my family’s experience that we created Leeza’s Place, and that’s why we offer free support services to focus on the caregivers. This isn’t a disease that’s 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.
The art of caregiving often has guilt as its constant companion. At Leeza’s Place, we give caregivers permission to feel whatever they’re experiencing, and then we give them a strategy, an approach, a shoulder to cry on, a heart to lean on, and the faith that they’ll make it through. We know that caregivers often experience so many stress-related challenges that they get sick and die before the ones they are caring for.
“Compassion fatigue” is a very real syndrome, and we’ve seen caregivers afraid and frazzled down to their last nerves. We say you should “take your oxygen first,” meaning: Nourish yourself; keep your body strong; take a break; forgive, forgive, forgive yourself. And that’s the first step toward caring for your loved one.
How do Leeza’s Place mentors fit into this?
Mentors and “befrienders” are the not-so-secret weapons in the army of caregivers at Leeza’s Place. Families who have already walked the path you are now on are uniquely qualified to provide sensitivity, share their experience, and know the resources that can help.
Once you 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 goes into a skilled nursing setting or dies. A blanket of support extends in different directions to accommodate whatever reality life throws at you.
Why do you include scrapbooking as an activity at Leeza’s Place?
Scrapbooking has been one of our core curriculums from the beginning. It was designed for people with memory disorders. But as we began to do it with our guests, we realized it’s an empowering process for everyone involved — caregivers and their diagnosed loved 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 that experience and those feelings, we validate their importance and we cherish the memory 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.
Can you describe the intergenerational approach that you advocate in dealing with Alzheimer’s?
At Leeza’s Place, we do something I love 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. They can be anything from college letter sweaters to Bat Mitzvah invitations, old photographs to record albums.
We help them build a set, almost like a TV talk-show environment, surrounded by these depictions of their lives. Then family members — from the littlest to the most senior members — gather together and interview each other.
We’ve found that we become so immersed in the day-to-day routines that we often forget to tell our stories. That’s what “memory television” is all about: seniors talking about the old days — a family farm, a first business, immigrating to America — and a chance for the younger members of the family to ask questions in an environment that’s safe and supportive. “Why didn’t you tell me you were sick?” “Why did we move?” In the end, it’s almost like group therapy.