Mediaplanet: It must have been difficult for you and your family to care for your mother after she was diagnosed, especially when her condition started to progress into more severe stages. What challenges did you and your family faced throughout this process?

Leeza Gibbons: Every family faces stress, isolation, guilt and helplessness along with physical and emotional exhaustion. When a loved one is diagnosed your world stops and you are alone with the burning question: “Now what?” We were lucky because my mother was courageous and strong when we were in denial. Because her mother had faced the same fate, she knew where she was headed. This disease will not wait for you to be ready. You have to adjust to your new normal and those who survive know they can’t do it alone. Our initial challenge was to ensure that she felt empowered and could maintain her dignity. My family all worked as a team and began to research what we needed to know and where we could get help. Ironically, as my mother began to disappear from her own life, I learned how to really show up for mine.

MP: Did you need to take any precautionary measures to ensure your mother’s safety when she was living at home after she began showing symptoms of dementia? 

LG: With dementia, patients often “rewind” and mentally go back to another time in their lives. Mom had been a smoker, and we were worried she would light the house on fire. We discovered that she was happy just having a pack of cigarettes in her purse with no matches. She would take them out and forget that she hadn’t lit one up. It was the same with car keys. We knew it wasn’t safe for her to drive, but we didn’t want her to feel trapped. People come up with all kinds of techniques and strategies, but for us, it was the power of the little white loving lie. Mom took her car keys with her everywhere. When she wanted to drive, we’d let her know that the battery was dead and we had called the mechanic. Sure enough, we had disconnected it so when she tried to start the car, nothing happened. We did all kinds of things to make it work with mom at home— from post-it notes all over the house reminding her of things she needed to know or do, to simplifying her wardrobe so that any choice she made was a good choice. We narrowed it down to all solid colors that would work together with pull-on options or easy to fasten hooks and buttons. Accessories were eliminated. That allowed her to dress herself for a longer time. 

MP: At what point you decide it was time to change the living situation? How and why did you come to that conclusion?

LG: We had the blessing of my sister moving back home from California to help dad take care of mom. This was a huge advantage because it gave the rest of us eyes on the situation and offered my dad a break. He and my sister took the brunt of responsibility. Like soldiers showing up for duty every day, they were the heroic hands-on caregivers. We were fortunate enough to bring an in-home aide to work with mom. They soon after became best friends, which is why I am such an advocate for in-home care.

"She was wandering and becoming more difficult to bathe and feed. Her personality was changing; becoming more resistant and sometimes hostile."

Sometimes a person outside the family can change the dynamics in a wonderful way. The rest of the family wrote checks, organized next steps and appointments and handled the legal concerns along with being advocates for mom with her medical team. While we had our share of tension and anxiety, it worked as well as it could for as long as it could, until it was clear that we could no longer keep her safe. She was wandering and becoming more difficult to bathe and feed. Her personality was changing; becoming more resistant and sometimes hostile. She was lashing out, putting my dad in the position of having to try to control her behavior. We were blessed because she had already made her wishes clear. When she could no longer call us by name, she didn’t want to live at home. It was pretty incredible and such a gift for us to have our marching orders directly from her. It’s a beautiful lesson for others to begin these kinds of conversations when we are still well.

MP: When was the exact moment you decided to make it your life’s mission to raise awareness about Alzheimer’s disease and provide support for caregivers? 

LG: I’m not sure there was a single moment, as much as a series of things that tugged at my heart and guided my steps. Ultimately, I did it because I promised my mother that I would use my training as a journalist to tell our story and to use it to help others. “Tell it and make it count”, she said. At first I produced talk shows about Alzheimer’s disease and was a guest on many programs telling our story with great respect for my mother and father and the way they were showing up for this painful part of their lives. 

After a couple of years, we created in the world what we wished we had to help us with our journey and that became Leeza’s Care Connection, a place to summon your strength and call on your courage while you adjust to a new normal. We offer care for the caregivers and help connect them to resources, programs and support. After doing it for ten years, I think perhaps the most valuable thing we do is simply connect them to each other so they feel more empowered and less alone. As a caregiver, I knew how hard it was to feel anyone could really understand how you felt, so we decided to make our Care Connection a safe oasis providing a blanket of support. I say it’s a place to breathe, believe and receive, knowing you can take the next step forward with a plan and a community to help you get there.

MP: You are credited as a New York Times best-selling author, entrepreneur, philanthropist, television personality, journalist, mentor, daughter, mother, caregiver and more. Your work ethic, determination and accomplishments are nothing short of impressive, but it seems that you voluntarily stretch yourself thin. Do you feel that assuming the role of caregiver for your mother while balancing all other aspects of your life for almost a decade has influenced your desire to keep busy? How have these experiences impacted your life’s course and motivated you to take the path you have?

LG: My mother’s disease has been a turning point for me in so many ways. On the day we buried my grandmother, my mom had just been diagnosed with Alzheimer’s disease, the same disease that took her mother’s life. As she looked into the face of the woman who gave birth to her, I looked at my mother. Then there were the ones to whom I gave birth, my children, looking at me. I had a visceral reaction that still lives deep in my bones. I knew I wanted to rewrite the story and since then I have been enthralled with ways to hit the reset button on your life. Ironically, I also learned to slow down and be more present. 

In the beginning, I tried to numb my pain in my constant state of being too busy. Some people drink too much, sleep too much, spend too much money; anything to avoid the feelings. I was busy, but ultimately I came to realize that being with my mom in a state of silence and brushing her hair or singing to her was enormously comforting. 

Her illness taught me to be accountable for the energy I bring into a room with anyone. It taught me to be grateful and that while I couldn’t go back and rewrite the story from before the diagnosis, I could decide how I wanted it to go from this point forward. Mom showed me that it was imperative that I learn to nourish my mind and body so I could go the distance in my goal to help others. “Take your oxygen first” is a mantra that I share with anyone on the caregiving path. 

MARCHING FORWARD: "Her illness taught me to be grateful," Gibbons shares. "While I couldn’t go back and rewrite the story from before the diagnosis, I could decide how I wanted it to go from this point forward."

MP: Although researchers have been unsuccessful in discovering the exact cause of Alzheimer's disease, one of the strongest known risk factors is family history. As both your grandmother and mother were diagnosed, the chance of developing Alzheimer’s disease yourself is fairly high. Has this knowledge swayed you to do anything differently? 

LG: I’m not naive, but I’m not about to sign up early for a problem that may not be mine to take. I’m very aware of the risks, but I know stressing and worrying about it are not going to have an effect on the outcome, other than to accelerate my chances. I do all the things that are known to be protective from getting enough sleep to oxygenating my brain with regular exercise and managing my stress.

I was on the board for the California Institute for Regenerative Medicine for five years. I love keeping an eye of the scientific developments and I’m certain we are closing in on it, but we all have to get engaged and enraged to make finding a cure a national priority. Women over 60 are six times more likely to develop Alzheimer’s disease than they are breast cancer. Every 67 seconds someone is diagnosed. This is more than personal. 

MP: Through your diverse array of advocacy and awareness initiatives, you have done so much to improve the mental, physical and emotional well-being of millions of family caregivers. Is it painful for you to give thought to the topic of family caregiving on such a consistent basis, having gone through nine taxing years of caring for your mother?

"Women over 60 are six times more likely to develop Alzheimer’s disease than they are breast cancer. Every 67 seconds someone is diagnosed. This is more than personal."

LG: It’s quite the opposite. I love the work I do in this area and am never depleted or depressed by it. Sometimes I get frustrated because there are not enough resources for family caregivers and not enough support to help them sustain themselves and their loved ones, but overall I am energized and inspired by the courageous caregivers that I meet along the way and I am proud to tell their stories. 

Soon we will open Leeza’s Care Connection in my hometown. Then, I will get to offer our free services to those in the neighborhood where I grew up, where my mom lived, loved and died. My dad will be an important part of it offering his expertise, knowledge and compassion. When this happens it truly will be a dream come true.

MP: If you can share one piece of advice with family caregivers everywhere, what would you say?

LG: Drop the dread, banish the blame and be a victor, not a victim. Easier said than done, I know. There is strength in knowing your limits, so reach out and connect with those who been there, relying on others to help you call on your courage. The tendency is to draw the shades up tight and pull the covers up over your head, but all that gets you is a deeper pit to crawl out of when you have to face the reality. And you will have to face it. 

Life kicks you to the curb, so you have to learn to kick back. In your elevator to success in caregiving, you’ll have to stop and let some people off. Release and forgive those who steal your energy, create negativity and do not support you. You can hold on to yourself and show up bigger in your own life even while you are helping someone you love disappear from theirs.