Leeza Gibbons: 'Those Who Are Forgetting Will Not Be Forgotten'
A HealthCentral Celebrity Spotlight Q&A
Alzheimer’s disease afflicts some 24 million people worldwide and is the seventh leading cause of death in the United States. The enigmatic memory disorder will eventually rob the minds of one out of eight baby boomers. Leeza Gibbons is intimately aware of the devastating toll Alzheimer’s inflicts on its victims and their families – both her mother and grandmother succumbed to the debilitating disease. In their honor, the former Entertainment Tonight host and Dancing With the Stars contestant co-founded Leeza’s Place in 2003. The charity organization is dedicated to educating and empowering patients and caregivers at eight support centers throughout the country.
HealthCentral correspondent Kim Lachance Shandrow, whose grandfather also suffered from Alzheimer’s, recently caught up with Leeza to discuss how caregivers can cope with the emotional rigors of nurturing loved ones who fade away more each day.
Can you describe your initial reaction to your mother’s diagnosis? What words of comfort and reassurance could you offer those who have recently learned of their loved ones’ diagnoses?
Even though we had seen my grandmother decline and eventually disappear from Alzheimer’s disease, when it was my mother’s turn to learn the shock that her fate would be the same, we were still in disbelief. Denial initially seems like a much safer place. I spent a good deal of energy trying to find answers and solutions. But no amount of time, commitment, money or resources could reveal the cures or therapies that I was looking for. I often tell people who receive this devastating news to be patient with themselves and with their loved one. I think flexibility and forgiveness can become your constant companions during this process, with an awareness and recognition that you must join your loved one in their new world, for they can no longer keep up with yours. The sooner the family “names and claims” the disease, the sooner the healing and support can begin. I find many times there is guilt and regret over things said and actions taken which could have been avoided if there had just been an awareness of what was really going on.
Our mantra at Leeza’s Place is to encourage caregivers to “take the oxygen first.” It is essential that caregivers get the emotional, physical and spiritual nourishment they need to then offer those things to someone they love. We are seeing caregivers decline, many times at a rate faster than their loved ones, due to stress-related disorders.
Tell me about Leeza’s Place. What kinds of help do you offer Alzheimer’s patients, caregivers and family members?
Leeza’s Place is an extension of my mother’s courage, her dignity and her grace in dealing with her diagnosis of Alzheimer’s disease. My co-founder and friend Jamie Huysman and I created what we wish my family had during this frightening and frustrating time – a warm blanket of support, a safe place to take your oxygen and know that you are not alone. Leeza’s Place was designed to be an oasis for caregivers to gather their strength for the difficult journey ahead and for those who are diagnosed to feel empowered.**
At Leeza’s Place we create an environment where you can get connected, get coached and get confident about what is next. We currently have eight support centers with many more in development and we’re so proud of these loving and thriving communities.
What advice could you offer caregivers who are tired, frustrated and often scared of the challenges their loved one’s descent into the later stages of Alzheimer’s will inevitably bring? How do you reach out to your father, Carlos Gibbons, when he’s feeling tired and overwhelmed as a caregiver?
I think it’s helpful to remember that patience is a prerequisite for any encounter with someone with Alzheimer’s disease. Our timetable is not theirs. Everything will take longer. We need to reevaluate our expectations and to know that there will be good days and days that will be much darker than others. Being willing to admit when you’re frazzled and emotionally depleted is better for you and your loved one than trying to be a martyr and risk everyone’s health and well being.
It’s very easy for caregivers to become overwhelmed and to isolate when providing care to someone with a memory disorder. It’s physically exhausting and mentally depleting and sometimes spiritually defeating. I always think it’s helpful to offer the caregiver a change in venue, conversations and exposure with people who are not coming from a place of need.
Depression is very common in caregivers and those diagnosed. My father went through a stage where he was so depressed, so guilty, so despondent, that he would go into his room at night, close his door and we didn’t think we would get him back. It was when he was able to reevaluate his relationship with his mother to grieve for the one that had passed and to embrace the one that was now reality that he began to emerge from his self-imposed cocoon of isolation. People always want to help, but when you ask a caregiver what they need, they almost always tell you “nothing.” The idea is to show up offering something anyway; a non-judgmental listening ear, a dinner, an hour away, an offer to run errands, a card, a plant, anything to show the caregiver that they are not alone.
When I look back on the few memories I have of my grandfather before his diagnosis, what I miss the most is dancing with my feet on top of his at his annual company Christmas party. What do you miss most about your mother before she was diagnosed with Alzheimer’s and how does your family keep those memories alive?
Every time I travel anywhere, I miss my mother. She was always ready for a road trip and an adventure. Her laughter was easy and she shared it with anyone. I miss her spirit of spontaneity. I miss long talks over hot cups of coffee. I miss beating the eggs and pouring the sugar to make a chocolate cake. And I miss picking up the phone knowing that her voice would be the most comforting thing I could hear on the other end of the line. When my mother began to disappear because of this disease, I began to scrapbook. It has been incredibly helpful to keep her memory alive through the pages of my scrapbooks. Somehow I feel as if I’m having a chance to finish her story and set the record straight about her life.
My grandfather often forgot my name as Alzheimer’s took hold. He later mistook me for a boy and eventually failed to recognize me at all. I was only twelve at the time and very frightened and confused. Have your children – Lexi (18), Troy (16) and Nathan (10) – experienced similar emotionally challenging situations with their grandmother (who they call “JG”) and how have you helped them cope? How can fellow “grandchildren of Alzheimer’s” learn from your children’s courage?
I’m so proud of my children and their love and tenderness they have shown in dealing with their grandma’s disease. My youngest has never known her without this thief of memories. While they have been gentle and kind, they have also been confused and frightened by my mother’s behaviors and lack of connection. Where is the loving fun JG? I’ve encouraged them to express their feelings and have tried to be honest with them. Each of them has found it helpful to write their feelings and share their emotions (at the Leeza’s Place Web site, for example). It’s part of what we do at Leeza’s Place for all ages whether it’s through scrap booking, support groups, journaling or memory television. The unspoken fears get way too much power if left unexpressed.
I remember being petrified of my grandfather when he erupted into sudden, loud and sometimes violent outbursts in the latter years of his struggle with Alzheimer’s. He was so gentle and laid back before the disease. As a young child, I felt guilty for fearing my own grandfather. How can grandchildren (and fellow family members and caregivers) continue to express love and respect for those struggling with Alzheimer’s when they’re simultaneously feeling scared, confused or even threatened?
My mother gave us so many gifts and so many effective shields to use during her decline. One of them was to tell us, “When I kick and scream and call you names, remember it’s the disease talking and not me.” And while before that I could never imagine my mother being cruel, uttering profanities and calling her children names, when those things occurred, I did have that buffer of her reminder. I think changes in behavior are the most difficult aspects of Alzheimer’s disease. I always tell my children that “love is love”; it transcends memory and a heart never forgets. But it’s incredibly difficult to stay in a loving, safe feeling place when there is a family member with Alzheimer’s disease, becoming aggressive, combative or even violent. When someone has something wrong with their physical body, we can emotionally adjust to that; we understand that something is broken. But when it’s a brain that is not working right and the person looks so normal, it’s hard to remember that they are not responsible for their actions and they can’t control their outbursts. Rule number one is to not take it personally. I think that young children should be monitored and caregivers should be very aware of what is age-appropriate for exposure to a person with Alzheimer’s disease because the behaviors can be so unpredictable.
It was reported in the March 2008 issue of the Archives of Neurology, a Journal of the American Medical Association (JAMA) publication, that children of parents who have both been diagnosed with Alzheimer’s disease have an increased risk of developing the disease. How can adults whose parents, and even sometimes grandparents as well, were diagnosed with Alzheimer’s gain access to dementia screenings, resources and support? Have you participated in memory screenings and do you have any fears of developing Alzheimer’s yourself?
I certainly don’t live my life in fear and yet I am not naïve about my increased risk for Alzheimer’s disease. I do everything I can to become educated about possible preventions, including supplements, diet and lifestyle changes and stress management. Memory screenings seem, in my opinion, like a great tool in the arsenal against memory robbing illnesses. It is only when we have knowledge that we can become empowered to effect change. Being in the darkness about something as insidious as Alzheimer’s disease offers nothing. We’ve had so many people come to our Web site to take both the depression screening and memory screening. Both are free preliminary tools to use as an information gathering process to take to your doctor. I have taken the Leeza’s Place memory screening. While it is not a tool of diagnosis, I believe my outcome reflects that of most other people; a sigh of relief that I show my memory to be within normal range. Even if it is not, there are things we can do to manage our risk and slow the onslaught of symptoms. These things happen best when they are revealed early on in the process.
Someone is diagnosed with Alzheimer’s disease every 71 seconds. A cure couldn’t come soon enough. You have spoken out in favor of human embryonic stem cell research. Last year you were named to the board that oversees California’s stem cell research agency. Meanwhile, drug therapies that could reverse some of the memory loss caused by Alzheimer’s are being tested. So-called Alzheimer’s disease vaccines are also in development. Which potential cures do you feel are most promising right now?
Alzheimer’s disease is like a great big jigsaw puzzle and we are having the darndest time trying to put the pieces together. It’s such a mysterious and baffling illness. I am very hopeful about the treatments, remedies, vaccines and ultimately cures that may be derived from stem cell research, not only from human embryonic stem cells but from adult cells and umbilical cord blood as well. There are some great success stories out there and everyday we’re getting closer and closer to learning what actually might cause the disease. I believe the memory disorder community should band together to be one voice heard loud and clear above the fray. This disease is bankrupting our health care system and is tearing families apart everyday. We must ensure that those who are forgetting will not be forgotten.
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