Leeza Gibbons may have a star on the Hollywood Walk of Fame, a raft of Emmy nominations for her 1994-2000 daytime talk show, and a current work resume that boasts of two TV co-hosting gigs (on “America Now” and “My Generation”) and the syndicated radio show, “Hollywood Confidential.” Not to mention her own mineral makeup line, Sheer Cover, and an award-winning book under her belt (Take Your Oxygen First) with another on the way (Take 2, out February 5, 2013).
But of all Leeza’s ventures and interests, what she loves most is reaching out to the millions of family caregivers in the U.S. with a been-there-done-that kind of support she says is sorely needed.
Leeza’s own experience of caring for her mother, who died of Alzheimer’s in 2008, opened her eyes to the need for resources and support for caregivers, particularly those dealing with Alzheimer’s. “Caring for someone with memory loss is one of the most depleting forms of caregiving,” she says. “But the whole notion of caregiving in general—it’s the thing that we don’t really have language for. Nobody really prepares for it, and it’s the ultimate sure thing.”
Since 2002, Leeza has been helping families better anticipate—and navigate—the caregiving territory through The Leeza Gibbons Memory Foundation and its signature program Leeza’s Place, which offers free services for family caregivers. She has laid bare her own family’s struggle to come to grips with her mother’s disease, the “changing of the guard” that happens when the parent/child roles reverse, and the turmoil that often occurs when family members try to parse out caregiving responsibilities through a series of videos on Alzheimersdisease.com. “My dad, my brother, my sister-in-law and all of our children had a no-holds-barred intimate discussion on video,” she says. “I hope that by sharing what we experienced will be a trigger for other families to talk about what they’re going through.”
That caregiver-to-caregiver sharing of experience is the idea behind Conversations in Caregiving, a live webcast on November 15, where Alzheimer’s caregivers can submit questions and have them answered by Leeza and a team of experts.
We spoke with Leeza about the challenges—and rewards—of caregiving.
Spry: How do you suggest people who are heading into this caregiving relationship begin to plan? There’s this idea that we’re going to will something bad to happen if we think about it too much. How do we get over that?
Leeza: An unnamed enemy has way too much power over us. There is great strength and comfort in knowing our limits, and it’s courageous to accept our limits. Part of our basic need on the planet is connectiveness. And when we’re caregiving or receiving care, we’re so intimately connected to another person—but we resist it. When we can relax into it, and we can accept the new reality, it can be so rewarding. But that’s a process; it’s a real process.
The people who are ahead of you on the path have incredible wisdom. Just knowing that somebody has survived it and is still standing is incredibly validating. And I think that’s probably the answer to your question, being able to look far enough down the path and say, “Wow, there’s somebody who’s been able to hang on to themselves while letting go of someone they love.” Life is really just a series of hanging on and letting go, and it’s that dance of knowing when to do which.
Spry: How did you plan for your mother’s care? Did you have the same challenges faced by the caregivers you connect with now?
Leeza: One of the reasons why I felt so passionate about being an advocate for these kinds of issues is that I was one of the lucky ones. My mom communicated her wishes. She saw her mother die of Alzheimer’s disease, and from the time I was a little girl, my mom talked about what she wanted for her funeral and how she wanted to be taken care of. That was incredibly courageous and saved us a lot of bickering as a family. Trust me, we were still in denial, we still didn’t want to accept it, but it got us to our own moment of truth more quickly.
Spry: How did you deal with the conflict and denial?
Leeza: We said: What if we just got real about it? What if we just talked about it? We talked about the diagnosis and what it was like to have that moment, what my dad went through, my resentment about my brother not showing up in the same way that the rest of us thought we were showing up. Everybody wants to believe that we all love equally, but families get into real locked-horns over trying to divvy up responsibilities with caregiving, and it’s not possible. Most healthcare advocates will say to let that go, because we spend so much time trying to make it fair instead of trying to make it work.
Spry: Wouldn’t it be helpful to talk through each family member’s strengths and how they can contribute in the best way possible?
Leeza: In a non-emotional situation, that would make sense. But when your heart’s involved, it’s not so easy for the logical roles to present themselves. All those childhood wounds, all that stuff comes out.
Spry: Your mother was good about communicating how she wanted to be cared for. What would you advise if you have a parent who isn’t going to initiate any of those kinds of conversations?
Leeza: Parents are used to nurturing and protecting, and they don’t want to ever be a burden on their children. It’s a dignity issue, and as children, we have to be really sensitive to that. That’s why conversations need to happen when you’re not in the middle of a health crisis. But when you’re already in a health crisis, I think it’s a great idea to have someone else be the “bad guy.” There are so many non-profits and health agencies and even online support groups where you can have somebody anonymous be an intervening force, so nobody in your family has to wear that title. In most families it’s easier to have somebody from the outside come in and say, “Let’s talk about so and so,” or “Did you read the article by this doctor that says this and that?” Even with your family physician, talking with your physician about: Can you bring in a neurologist? Can you bring in a specialist? Because to take that on as a child or as a sibling is much harder than having the professional help shoulder that burden for you.
Spry: What would be the first step you would take if you were at, say, Thanksgiving dinner and you’re noticing that your mom seems more forgetful, she’s telling the same story over and over again or somehow seems like she’s may be declining?
Leeza: A public gathering is not the time to take it on. Redirecting the concern and cushioning any potential embarrassment to the loved one at that moment is probably the most loving thing. Then plan for a follow up when there can be more attention put on whatever the incident may be. Expect resistance, expect maybe even indignation—it’s not like there are many cases where the loved one is going to say with open arms, “Thanks for bringing this to my attention; I’ve been worried too.” That does happen, but it’s rare. And it’s rare because the loved one is scared too. These unspoken fears cause us to build walls, and they get higher and higher and they become impenetrable. Emotions run so high at the holidays anyway. We have to remember that a couple of really important “F” words: flexibility and forgiveness. To be more forgiving than you think you can be, and more flexible than you’ve ever been.
Spry: What if you plan a follow up visit after the holiday hoopla is over?
Leeza: That’s a great idea, because the hoopla hides what’s real. Trying to drop in when there’s more consistency of day-to-day reality is when you’re going to get your best viewing of how you can be helpful. The other thing that can be helpful is to take time and write something down that’s simple but thoughtful, that maybe your parent can spend some time with. So you can say “I want to come visit you next month maybe when we get together we can talk about A and B.” Not too elaborate. Not too much. Not like an inquisition, or like a big task. Maybe to give both sides some time to sit with it and really think about it.
Spry: A recent survey suggested that people often become caregivers without being aware of it—their parents slowly decline, and the adult children take on more and more responsibility until they are overwhelmed. Do you have any ideas on how to recognize where that turning point is?
Leeza: We get so blindsided by our own fear and our own sense of loss that it takes us a second to go “Oh my gosh,” because we’re so used to being cared for by this person. It means a loss. It means a lifestyle change. It means grieving. It means we have to become a service for our parent. It gets back to how do you get to that earlier, and that’s through conversations. The culture is shifting, and this is why we’re doing Conversations in Caregiving. We’ve got people who are looking ahead, who are already saying “What if?” We didn’t have that years ago. I think it’s getting better, I think we’ve got people coming to it earlier. This is really just an awareness situation, and I think the web is the biggest advantage that we have going in the past decade.
Spry: Did you ever feel burned out as a caregiver? I know you have three kids too, and a huge career. How did you step back and re-energize?
Leeza: You know, it’s really vital to do that, but it takes daily awareness. Before my mom died, I didn’t realize how quickly the pressure builds up. At that time I was hosting Extra, and I would get off the air and head out the studio door, and I would walk. The stage was in this residential area, and I would walk and walk and walk and walk and I record whatever was on my mind on a little digital recorder. Some days I would yell and scream and cry and some days I would ask questions. I don’t know what I said into that recorder, but I did it religiously, and it was like a valve release. That was helpful—as much as anything, the exercise was helpful. I felt like most people feel; I didn’t think other people would understand. I felt very isolated, and I didn’t want to share the problem with anyone, I didn’t want people to think I couldn’t handle my life and I didn’t want people to see me as being weak. We forget that showing our vulnerability is strength, it’s not weakness. And when we ask for help, that’s a sign that we’re aware. And that’s part of what I love about the work I’m doing now.