One evening Leeza Gibbons, the celebrated radio and TV personality, was out to dinner with her mother. She told me in a recent interview that after dinner her mother went out and got in the wrong car. It didn't even look like Leeza's car. Then they went to her home, which her mother had visited hundreds of times. After a few minutes she said, "This is such a beautiful place. Is there a room for me here?" After two years of being in denial, Leeza finally had to face the cold hard truth. Her mother had dementia.
While she does have a star on Hollywood's Walk of Fame, Leeza is also a powerful star in the world of Alzheimer's caregiving. Both her mother and grandmother had the disorder, and that's when she learned first-hand how devastating the disease can be for caregivers. Leeza said that "caring for an Alzheimer's patient is a situation that can utterly consume the lives and well-being of the people giving care, just as the disorder consumes its victims."
In the earlier stages of her illness, Leeza's mother had asked Leeza to tell her story and make it count. So she established the Leeza Gibbons Memory Foundation and launched Leeza's Place. With four locations across the country, Leeza's Place aims to provide a safe, home-like setting where family caregivers feel comfortable with their new caregiving challenges and can put together a team of support and resources to create their own strategy for coping.
Leeza and husband, Steven Fenton.
Leeza's Places offer an impressive array of help to caregivers -- presentations and workshops, mentoring, information and referral assistance, a resource library, support groups, help with making videos about family histories, and arts and crafts that can help reduce caregiver stress. "If caregivers are not healthy, mentally well-balanced and spiritually sound, then those for whom they care will suffer," she said.
The centers also provide opportunities for caregivers to increase their energy. These include alternative healing methods, health and wellness programs, social gatherings and events, exercise activities and an online community and caregiver support blog.
"Alzheimer's caregivers are heroes," said Gibbons. "It's such an incredibly difficult and isolating job. We need to provide a life raft to these people who are in a river of pain which quickly turns into a tsunami. We can change the world of Alzheimer's caregiving if we focus on this population. I want to establish care connections -- caregiver relationships with each other, with resources and with 'sanity sanctuaries', where they can revive their spirits."
In 2009, just a year after her mother's death, Leeza published a book, Take Your Oxygen First. Co-authored by James Huysman, PhD, and Rosemary DeAngelis Laird, MD, it provides information about memory loss and is packed with advice for caregivers about how to take care of their bodies, their minds and their spirits. It also has a special section with photographs where Gibbons tells the story of her family's struggle with her mother's condition. She said to "consider this book a visit to Leeza's Place."
Take Your Oxygen First is a book all Alzheimer's caregivers should read. I only wish I had it during the seven long years I was taking care of my soul mate, Ed. It would have compelled me to take better care of my own health and might have helped me understand and deal with my anguish over losing the wonderful man I had admired and loved for so long.
As described in my own book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, I endured an incredible amount of physical and emotional stress. Like Leeza and most other caregivers, I had days when I didn't know how much longer I could continue. However, there were some joyous days, too, and I still remember those special moments and how they helped me get through what was the most challenging period of my life.
Gibbons said the most stressful aspect of her mother's illness was "not being able to fix it. I was a middle child and was used to negotiating. But there was nothing I could do to reverse my mother's condition. I felt so helpless. Looking back now I can see I spent entirely too much time trying to make it all go away.
"As stressful and painful as it was, however, there were light moments, too," Gibbons said. "Early on, mother had insisted she didn't want to live with any of us kids. So when the time came to move her to a caregiving facility we started packing up her belongings. We found a leopard bikini and put it aside, telling her she wouldn't need it. She told us adamantly, 'You don't know what I'm going to need there. I'm taking it!'"
Leeza Gibbons' book, her foundation, and the four locations of Leeza's Place are all amazing resources for caregivers. You can learn more at www.leezasplace.org.