42: Make Your Wishes Known

42: Make Your Wishes Known

From Chicken Soup for the Soul: Family Caregivers

Make Your Wishes Known

A Note from Joan

I’ve known Leeza Gibbons for years. Our careers have somewhat paralleled each other as television hosts and working moms. Over the years we have laughed about how the press has always portrayed us as “the ultimate multitaskers who are handling it all” when in reality it’s been a lot of hard work and dedication to have an amazing career while also raising our families.

When you are responsible for fronting a major network show you take on a sort of superwoman mentality. You can do it all and nothing can take you down. Well, almost nothing. For Leeza, she found it more and more difficult to put on a happy face as her mother’s state of mind began to deteriorate.

Joan: When did you first learn that your mother had Alzheimer’s?

Leeza: My mother was actually the one who pushed us out of our dens of denial. She was one of those strong southern women who could see a crumb on the floor two rooms away and whose disapproving look was the harshest punishment I could ever imagine. She ran that household as Chief Goddess In Charge! It was when she had paid the same bill three times that she gathered us together and said, “Something’s wrong.” Mom had seen her mother succumb to Alzheimer’s after over a decade and I think she had that sickening churning in her stomach long before she let on.

Joan: How did you deal with the news when you first heard?

Leeza: Look, I knew what was happening, but I wanted to continue to go to that safe place that allowed me to come up with one excuse after another. “She’s drinking too much. She’s depressed and tired. She’s not getting enough sleep.” The pain of seeing my vibrant, beautiful mom disappear memory by memory was overwhelmingly sad. If Mom was in trouble, we were all going to unravel. She was the middle of the seesaw and I’ve been out of balance ever since we got the news. I tried to be the sweet, but stoic, daughter who was always reassuring and strong. I leapt into action trying everything, anything that might help, that might “fix” her so that we could all wake up from this horrific nightmare. My over-busy frenzy numbed the pain for a while, but when I laid my head on the pillow at night, I sobbed at the futility of it all. Mom was dying in slow motion and we were reduced to witnessing her decline.

Joan: In your book Take Your Oxygen First you discuss the depression you faced personally while caring for your mother. Tell me about that.

Leeza: Even if you have great coping skills, even if your family agrees on everything, even if you are without an ounce of dysfunction, this disease will rock your world in ways you can’t even imagine. Everyone reacts and responds differently, but many are depressed and depleted. I sure was. As the middle child, I got good at negotiating and bargaining. As a TV producer and host, I got accustomed to controlling the environment and making things happen. None of it worked now, of course, and I felt like such a failure letting my mother down. This enemy spit back at me every time I tried to pull out my sword against it. I wasn’t sleeping, I couldn’t concentrate at work, I cried at everything and my kids had to deal with their mother pretty much “phoning it in.”

I felt guilty that I couldn’t make her better. I worried about her constantly. I remembered years before going with her to visit her mother with Alzheimer’s disease. She brought flowers, music, pretty nightgowns, but Granny didn’t react or respond to anything. I watched it all and agreed quickly when she would tell me, “If this ever happens to me, I don’t want you to come see me.” She repeated that request often and would ask me to promise her that I wouldn’t “waste my time” visiting her. “I won’t know you’re there, sweetheart,” she told me. When she got the news that she, too, had the disease that took her mother’s life, she ask me to make the same promise. I couldn’t do it and I told her “Mom, maybe you won’t know I’m there, but I will know. And even if you don’t need me, I will need you and I’ll never leave you.”

Joan: Is there a specific moment that you remember that resonates with you?

Leeza: My mother was visiting me at my home in Hollywood. She had always loved it there and stayed in the guest suite downstairs. One evening after dinner out, we came back home late and decided to go straight to bed. After taking a shower, I came to say goodnight and found my mother looking bewildered in the hallway. “Is there a room for me here?” she said. I knew from the way she was pinching her bottom lip and shuffling in circles that she was truly lost. “Sure there is Mom... let me take you,” I said, to which she replied, “You are so nice. Have you lived here long?” My heart was bleeding at the reality and yet I still tried to tell myself she was just drinking too much and I had to do something.

I was ready to take action and lead my family through an intervention to get help for Mom and what I thought was her alcoholism. A few weeks after the incident of Mom being lost in the hall, I had arranged a phone conference for my siblings and my father where I had planned to coordinate how we would get Mom to rehab. My mother walked into the room to find Daddy on the phone and she was furious. “I know what you’re doing. I know you’re planning to take me to that Henry Ford Center!” As funny as it was, I only wish we had been able to take her to the Betty Ford Center. They could have helped her... people live through being an alcoholic. She wasn’t an alcoholic; she was self-medicating with wine. The mental assault of knowing she was headed to the same place where she had lost her mother was just too much.

Joan: What advice do you have for those who are caring for an older family member?

Leeza: I think we are defined by the way we spend our time and who we love. When someone has Alzheimer’s disease, it’s unbearably cruel to know that those moments can’t be called upon to answer the question, “Who am I?” I can’t image what it must be like to live in that fog and to feel uncomfortable in your own skin. Your loved one can’t join you in your world; it’s important to remember to try to find a way into theirs. And that means leaving some familiar parts of yourself behind... like the parts that want to be appreciated and validated.

When someone is sick or forgetting, they can’t give us the validation we need and want when we are caregiving. Caregivers have such a tough job and it’s hard to do it without knowing we are making a difference. It’s hard to do it when the one we love can’t say “thank you.” Feeling unappreciated causes resentment. No one’s version of Happily Ever After includes being a caregiver. When we can’t get the recognition we need, it’s important to find ways to self-validate. I think it’s important to remind ourselves who the diagnosed person was before the disease and to recall how, in healthier times, he or she would be grateful.

Joan: Has this situation given you an opportunity to have a closer relationship with someone in your family—for example, a sibling? In what ways?

Leeza: We were so blessed to have my mother’s “marching orders” guide our actions. We never fought over what was right for Mom… we knew. She made certain of that. I suppose it was because she and her sister fought over what was best for their mom, that she didn’t want us to go through that. My aunt had promised Granny that she would “never put her in a home,” that she could always stay with her. Well, near the end, she was not able to care for Granny, not able to tend to her needs or even keep her safe. My mom insisted that Granny go to a skilled nursing setting where she would be cared for around the clock, but I know it broke my aunt’s heart.

To feel guilt over a broken promise is a horrible thing (even if it is the right thing). So, Mom told us, “When I can no longer call you by name, I don’t want to live with any of you. Got that, Leeza? Not with your sister, your brother, not with you. And you have to help Daddy know when it’s time to let me go.” She was courageous and thoughtful beyond belief.

As a result, our family, while stressed and frustrated during the experience, had a wonderful opportunity to be there for each other. We could accept what each person was able to bring to the table, knowing we each had limitations. We didn’t blame and shame each other—we really did work together, cry together, and ultimately make some degree of peace with our reality.

Joan: Was there a bright side in your experience?

Leeza: Mom’s disease demanded that I slow down, acknowledge my feelings and be more fully present. When language is taken out of the equation, and when there is no familiar backstory or history you can share with another person, you can’t fall into old patterns of avoidance. I learned to focus not so much on what Mom couldn’t do, but to celebrate the things she could do.

When she was having a good day, what I called a little “kiss from the angels,” I was able to be grateful for that. I learned that we are all responsible for the energy we bring to any situation, so I am now much more aware of what I put out into the world.

I believe that while my mother may not have known WHO I was, she was aware that I represented love and safety, so I learned to make sure I was resonating that when I was with her. I told my kids, “Love transcends everything and a heart never forgets.”

We get so uncomfortable with people who are incapacitated or different. We don’t know how to act or what to say. I hope I learned some empathy and I realized that just being present in silence with someone is powerful and beautiful. I learned not to be afraid of the “dead-space,” but to recognize that bringing my love and intention was enough.

Joan: In looking back, is there anything you would have done differently?

Leeza: I don’t live in regret, but I realize that I wasted precious time trying to find an answer. While I was making hundreds of phone calls, doing massive research to find clinical trials, exploring and investigating ANYTHING that I thought would help, my mom was slipping further and further away. During some of the periods of her highest cognitive functioning, I was off chasing windmills. Oh, I was doing it for the right reason. I mean, I really DID think I could find something to make a difference. If I could get back those months, I would have spent them in moments with her that were not focused on the disease. It defined all of us, and we could have left more time for laughter and lightness.

I also wish I had more on-camera memories from my mom. I treasure everything I have now that includes the sound of her voice. I didn’t realize she would go silent so soon. I wish I had her teach me every recipe she ever made, and share with me every secret she carried around for decades. I’m lucky that I was SO close to my mother—we traveled all over together—she was my best friend. There was nothing left unsaid between us, but I would love to have her narrative to all of the moments and memories that we shared.

Mom and Dad were married 55 years. On their 25th wedding anniversary, they got a bottle of champagne and a box of all their love letters. They read them one by one in front of a fire. After the words were spoken out loud, they burned the letters. Daddy said the idea was that the two of them would never forget those words—that they would live on in their hearts forever.

My mother forgot the words in those love letters, she forgot that she was in love and married and had children and grandchildren and a rich, wonderful life. How I wish I had those letters.

Joan: What advice will you pass on to your own children if something happens to you?

Leeza: I am not one who borrows tomorrow’s trouble today. Yet, I am not naïve. I tell my kids that the reason I am such an advocate in this field is to honor my mom’s legacy and to ensure that I do everything I can in my lifetime to scratch the track of this story for our family. I have prepared all of the legal documentation along with my personal wishes to ensure that if and when anything happens to me, they will not have to worry about that painful and burdensome part.

They know that I do everything I can to safeguard my health and manage my stress. Other than that, I believe we get what we focus on. I focus on staying physically fit and mentally active till I’m 100!

Mom gave me simple advice: “Show up, do your best and then let go of the rest.” I can’t really improve upon that!

Bad news has no regard for timing. Your bubble of domestic bliss is not immune, nor is your job or career. I was happily mothering my children and producing and hosting my own talk show on Paramount’s Stage 26 when Mom’s stage went dark. My anxiety spread to every aspect of my life and as much as I tried to present a façade of calm and acceptance, my persona never lasted past my driveway, and once home I became as tightly wound up as an angry fist. I snapped at the kids, withdrew from my husband and stayed up until dawn searching and searching for the latest treatments, the slimmest hope.

As Mom declined, I was trapped on a tilt-a-whirl of emotion. I managed to convince myself that if I just did more, she would be okay. The talk show ended its run and I immediately went on to the next stop on my career train, 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. My marriage was strained to the breaking point and I was depressed. I needed to let go of the way things were and accept this beast, which had pulled up a chair to my dinner table.

I sought the help of a therapist. It turned out to be more than a lifeline, it was the exploration I needed to reclaim my sanity. Robert, my therapist, provided a safe sanctuary in which to share my feelings. Jamie Huysman, the co-author of my book, was my tether to what would become a new life and a new sense of purpose. He was the friend who always had time for me, who never judged and who always reminded me to be kind to myself. When I was unsure, he was certain. When I was a squishy ball of frayed nerves, he was solid, strong and firm in his belief that I could make a difference. Jamie showed me how to fulfill the promise I made to my mother, to tell her story so that others might be helped and inspired.

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