Meet Leeza Gibbons, advocate for family caregivers, who advises looking for the small miracles.
By Heather Lamb
This isn’t a story about Leeza Gibbons. Not really.
It’s a story about Maria and Beverly, two women who became best friends late in life as they watched their husbands descend into dementia. It’s about Susan, a vivacious woman in her 50s with early-onset Alzheimer’s disease, who puts a relatable face on a profoundly isolating condition. It’s about Jean, Leeza’s mother, who, after her Alzheimer’s diagnosis, told her daughter, “Make it count.”
This is a story about people who summon strength in the face of heartbreak. It’s about preserving what we can preserve and letting go of what we cannot.
It’s a story about living. Most of all, it’s about that.
There are 5.4 million people in the United States with Alzheimer’s, according to the Alzheimer’s Association. Millions of their family members care for them, love them and watch as their spouses, parents or friends slowly disappear before their eyes.
Leeza started the Leeza Gibbons Memory Foundation in 2002, and soon after founded Leeza’s Place, an organization dedicated to supporting and caring for the caregivers of people with Alzheimer’s. Leeza’s Place has four physical locations (in California, Illinois and Florida), as well as online resources.
“I wanted to do something to honor my mother’s strength, and also her humanity and her humility,” Leeza says. “Leeza’s Place is about honoring families and empowering them to find the blessings in this dreaded diagnosis.”
Her family’s experience with Alzheimer’s followed a typical course. Leeza’s mother started showing signs of the disease when she was in her 50s. She was diagnosed 10 years later and died 10 years after that, in 2008. Jean’s own mother had died of the disease three decades earlier.
Their family’s journey was, by turns, devastating, uncertain, hopeful and, unfortunately, with an ending that was completely predictable. No effective treatment has been found to prevent the gradual descent into complete memory loss.
“With my mom and grandma having it, I had to get comfortable with the idea that I can’t control the outcome,” Leeza says. “It forced me to slow down. I had to drop the dread.”
That, in a nutshell, is Leeza’s greatest lesson.
As with any unfavorable diagnosis, there come feelings of hopelessness and helplessness. But accepting the diagnosis and its inevitable end brings power, she says.
It was important for her, both personally and in her work with Leeza’s Place, to foster a belief in miracles—not in the sense of false hopes, but in looking for glimmers of wonder amid the fog, for small but meaningful moments.
“The miracle may be that someone else in the family will step up in an unexpected way, or that you’ll realize your own strength, or that you have more to give than you thought,” Leeza says.
Leeza’s Place encourages caregivers to seek out these moments together. It gives them opportunities to push past the discomfort and allow other people in. That is the most vital service that Leeza’s Place offers—the support for caregivers to know, to really know, they’re not alone.
Maria and Beverly, who met at a California location of Leeza’s Place, are one example of what Leeza calls “logical families”—those who forge connections out of experience. Both lost their husbands to dementia, and together the two women faced the uncertainties and pain of that situation, while battling health problems of their own.
“They were able to really see each other in a way that people who haven’t walked the path can’t understand,” Leeza says.
The mission of Leeza’s Place has evolved and changed over time. “We started out focusing on the newly diagnosed,” Leeza says. “But we soon realized we could offer more help if we shifted to focus on the caregivers.”
Another change: Leeza’s Place recently expanded its focus to include services for caregivers of people with many different diagnoses, from autism to multiple sclerosis. The need for caregiver support will continue to grow as Baby Boomers, Leeza’s peers, age. “We know most people will either be a caregiver or need a caregiver,” she says.
She hopes to raise awareness of the importance of that role. She’s noted some progress in the 10 years since she started the foundation: last May, when the first National Alzheimer’s Plan was released, it included among its main goals to expand support for people with Alzheimer’s and their families. ( The No. 1 goal: to find effective ways to prevent and treat Alzheimer’s by 2025.)
“Everyone is talking about it now,” she says. “The disease is much less stigmatizing. We may not have a patch or a pill to cure Alzheimer’s, but there are things we can do.”
In recent years, researchers have found that reducing stress can bolster our ability to stave off, for a time, the onset of dementia symptoms. Things like laughter and adopting a positive outlook really can make a difference, however slight.
Scrapbooking is one way Leeza copes with stress and fosters optimism in her own life. She started it to share her mother’s life with her three children, who never knew their grandmother without the cloud of dementia: “My heartbreak was that my kids would not know her the way I did—her sassiness, her essence.”
In documenting her mother’s life and her own, she’s realized how important it is for each of us hto share our stories—not just the big, splashy events, but the little things as well. “I often put pages together about very small moments—a page about a look on my daughter’s face or a disappointment my son experienced,” Leeza says. “I’m using scrapbooking to remind my kids of who they are in the world.”
As a young girl, Leeza realized she loved storytelling. It’s what led her to a journalism career, and a reason she gravitates to scrapbooking, even though, “I’ve never been a skilled crafter.” (One of the great things about getting older, she says, is “that I’m OK with that.”)
Many people love the hands-on creativity of scrapbooking, but beyond pretty papers and fancy cutouts, Leeza says, is the chance to nurture while also doing something that’s artistic and fun. “Scrapbooking is another way to show how we care, how we love,” she says. “It’s also a beautiful and supportive community of girlfriends.”
Her own mother began scrapbooking as an adult. After she died, Leeza found photographs and notes of unfinished scrapbook pages.
“It made me proud that as she was forgetting, she was putting together evidence of our lives,” Leeza says. “All we are is our memories, and it is unbearably cruel to see that going away. I’m proud that until the very end, she was trying to preserve that. It’s a selfless, beautiful thing.”
A Thanksgiving tradition
Creating and continuing family traditions is another way to preserve those memories, and for 20 years, Leeza’s family has taken a “gratitude hike” after the Thanksgiving meal. They walk together to the top of a canyon near their home and share letters about what they’re grateful for.
“At first they did it just to humor Mom,” she notes of her children’s reaction. “But they grew to love it, too.”
The tradition has become an important bonding activity. Before Leeza married Steven Fenton in 2011, he came along on a gratitude hike, a measure of his acceptance by the family. Leeza’s older children, Lexi, 23, and Troy, 20, brought their significant others into the family by including them in the hikes, as 14-year-old Nathan may do someday.
Though they’ve moved to a new house, Leeza says the hikes will continue, either via a drive to their old neighborhood or on a new trail.
A new video series, Conversations in Caregiving, on AlzheimersDisease.com features Leeza and her extended family telling their caregiving story through generational points of view; the site also features winning advice from 10 Alzheimer’s caregivers, selected by Leeza and other judges as the most positive, unique, useful and affordable ideas for finding strength and support on the caregiving journey.
Leeza’s new book, Your Life, Your Rules, comes out in early 2013, as do her two new scrapbooking collections. She continues to co-host America Now, a nationally syndicated daily “news you can use” TV show, as well as My Generation on PBS.