AgingCare:
Your mother watched her mother struggle with the disease. What was it like for her?
Leeza:
I will never forget the day of my granny's funeral. My own mother had just been diagnosed with Alzheimer's disease and she now had to face losing her mom to the thief of memories. We were worried about how much mom could really decipher about the death and dying process. But the cruel reality was she was very lucid as she said goodbye to her mom. The scene that stands out most in my mind was seeing my granny there in an open casket, finally released from this cruel disease, finally peaceful, and there was my mother looking into the eyes of her mother as I stood back and thought about my children watching me. It was an epiphany for me when I realized that the emotion which guided me was stronger than grief. It was the need to create change. I didn't know how, I didn't know when, but somehow I knew that I needed to rewrite the story.
AgingCare:
By "re-writing the story," you mean founding Leeza's Place and the Memory Foundation?
Leeza: It's because of my family's experience we created Leeza's Place and that's why we offer free support services to focus on the caregivers. This is not a disease that is content to have just the diagnosed individual, it wants the whole family and it can suck you into a deep dark hole unless you take steps to bolster yourself physically, spiritually and emotionally.
Leeza's Place gives caregivers permission to feel whatever they are experiencing. Then, it gives them a strategy, an approach, a shoulder to cry on, a heart to lean on and the faith that they will make it through. Caregivers often experience so many stress-related challenges. Leeza's Place teaches caregivers to "take your oxygen first," meaning nourish yourself, keep your body strong, take a break, forgive, forgive, forgive…and that is the first step toward caring for your loved one. Once you've become a part of the Leeza's Place community, you're there. You're a part of the family and that includes whether your loved one dies, goes into a skilled nursing setting or whatever…a blanket of support extends in different directions to accommodate whatever reality life throws at you. (Currently, there are eight Leeza's Place locations in Florida, California, Texas and Illinois. More are planned to open in the future. For locations, visit www.leezasplace.org.)
AgingCare:
Tell us about some of the programs at Leeza's Place?
Leeza:
We do something I love at Leeza's Place called Memory Television. We invite our guests to gather together mementos, souvenirs and other items that are reflective of who they are as a family. It can be anything from a college letter sweater to a Bat Mitzvah invitation, old photographs and record albums and we help them build a set, almost like a TV talk show environment surrounded by these depictions of their lives. Then family members gather together from the littlest to the most senior members and interview each other about their lives. We found that we become so busy immersed in the process of day-to-day life that we often forget to tell our stories. That's what memory television is all about. Seniors talking about the old days, a family farm, a first business, immigrating to America perhaps…it's a chance for the younger members of the family to ask questions in an environment that is safe and supportive. "Why didn't you tell me you were sick?" "Why did we move?" And in the end it's almost like group therapy.
Scrapbooking has been one of our core curriculum from the beginning. It was designed for people with memory disorders. But as we began to do it with our guests, we realized it is an empowering process for everyone involved: caregivers, their diagnosed loves ones, the young and the old. When we take the time to elevate a memory and put it on a page, to write the words of those experiences and feelings, we validate their importance and we cherish those memories over and over. People with memory loss may have trouble remembering yesterday, but when they look at a photograph from 30, 40 or 50 years ago, they can recall every nuance of the scene.
AgingCare:
What advice do you have for other caregivers?
Leeza:
I believe in early diagnosis for any health challenge. An unnamed enemy has way more power over you than naming it, claiming it and building a plan to deal with the new reality. The fact is with Alzheimer's disease, the sooner you know, the more effective you can be in planning for your care, the more sane the process will be for your caregivers or loved ones and the more effective the meds are. The existing medications work best in the early stages. You are also more likely to be appropriate for research studies.
Again, my advice to get diagnosed early comes from my mother's example. Even though we should have been more educated as a family, we were in a state of denial. It was my mother who gathered us together to show us that she had paid the same household bill three times. She said, "Something is wrong." After she was officially diagnosed, mom was relieved to have a reason behind her behavior. She shared her diagnosis with her friends and the expectation level was lowered. So I feel that for those with the disease, it may be more comforting to know that you don't have to compete at such a high level. This is an individual call. Yes, there were some friends who faded away either out of fear or frustration, but there were so many people who offered steadfast love throughout my mother's decline. They will forever boost my faith.