Care for the Caregivers
TV host Leeza Gibbons founded centers for relatives helping seniors with disabilities after dealing with her own mother’s struggle with Alzheimer’s disease.
By Rebecca Kuzins 04/05/2013
My 88-year-old mother had been in declining health for several years, suffering from arthritis and other age-related problems, and I had been providing as much help as I could while working full-time and living 30 miles away. But last year, after I lost my job, I moved in with my mother. A few months later she experienced a serious bout of vertigo, which landed her in a rehabilitation center for two weeks. I assumed the responsibility of dealing with doctors and others at the center, and of overseeing her care when she returned home. Taking care of my mother had become my new job.
She can no longer drive, and I initially had to drive her to what seemed like a never-ending round of appointments. I am responsible for the food shopping, laundry and other household tasks and have to juggle these duties with my freelance work. I quickly became overwhelmed, resentful that my life was being subsumed into my mother’s and unable to view her deteriorating condition with objectivity. At the same time, I genuinely wanted to help her, and I questioned whether I could adequately perform my caregiving role.
I am not the only caregiver struggling with these emotions. An estimated 65 million Americans — nearly 30 percent of the adult population — are caring for family members, according to the nonprofit National Alliance for Caregiving. Television host Leeza Gibbons and her family were caregivers for almost a decade after Gibbons’ mother, Gloria Jean Dyson Gibbons, was diagnosed with Alzheimer’s disease. Gibbons created the Leeza Gibbons Memory Foundation in 2002 to fulfill a promise she’d made to her mother to “tell her story and make it count.”
Last July, the foundation opened Leeza’s Care Connection at Burbank’s Providence Saint Joseph Medical Center, one of three hospital-based centers it has established to assist caregivers and their dependent loved ones (the others are at Olympia Medical Center in Los Angeles and Memorial Hospital Pembroke in South Florida). The foundation and Providence Saint Joseph sought this partnership because the hospital is also home to the Hycy and Howard Hill Neuroscience Institute, which treats patients with Alzheimer’s, Parkinson’s and other conditions that often require caregiving.
Gibbons describes the center as “the womb room,” a “safe place where you can take a deep breath and gather yourself and then exhale, knowing you are not alone on your path to figure out where to go and what to do to adjust and adapt to your new normal.
“Caregiving is not anyone’s idea of happily ever-after, yet there are 65 million people living this reality. We want those people to feel empowered and resourceful rather than burdened and victimized. Our job is to help connect them to each other and to the services, products, places and people that can help them stay sane.”
Leeza’s Care Connection’s quarters at Providence resemble a living room, with a sofa, comfortable chairs and a television set, as well as an ample supply of coffee, cookies and candy. Stefanie Elkins, the facility’s program and outreach director, said the décor is designed to make visitors feel that they are “a guest, not a patient or a client.” She added that for many of the visitors, “this is the first time they are asking someone for help. They know something needs to change… They feel burned out, isolated, alone and not understood. They want to take care of their loved ones, but they feel they are not doing enough.”
The center provides numerous free services, in both English and Spanish, to help caregivers develop the skills that will enable them to become stronger, more resilient and accepting of the changes in their lives and the demands of caregiving. By coming to the center, caregivers can discover that they are not alone but are able to connect and communicate with others in a similar position, so they can reach out when overwhelmed or frustrated.
Leeza’s Care Connection offers numerous support groups, which serve the recently bereaved and those caring for individuals with early memory loss, among other hurdles. Elkins said these groups offer a “continuum of care,” in which caregivers can discuss their loved ones’ diseases from the earliest diagnoses through the period after their deaths. Another support group there, Caregiver Life Lessons, enables participants to share their personal experiences and discuss the challenges. There are also support groups for adult children who are caregivers.
Carol, a regular at a twice-monthly support group, said Leeza’s Care Connection helps relieve her stress and gives her the strength to care for her mother, an Alzheimer’s sufferer. “The community there is made up of people who are so wonderful that it is an endless resource of nourishment for me,” she said. “It nourishes me in such a way that … I feel connected. Otherwise I would be floundering around. I wouldn’t know where to begin.”
In addition to the support groups, Elkins said there are other “caregiver- driven” programs, such as a monthly book discussion and journaling group, in which participants discuss books about caregiving and share personal experiences written in their journals.
Leeza’s Care Connection also offers support groups for patients — individuals who have been diagnosed with Alzheimer’s and other memory-loss diseases. In these sessions, Elkins said, participants discuss the issues they deem pertinent to their illness, including lifestyle challenges and medical research.
Yoga classes are regularly offered as part of what Elkins described as the center’s “wellness approach,” which encourages caregivers to maintain their own physical and mental health so they can have the strength to assist others. One of the most popular activities is autobiographical scrapbooking, in which caregivers and their charges join together to preserve family memories through collections of photographs and other items. Scrapbooking, explained Elkins, enables caregivers to “engage with their loved ones, to reminisce.”
In addition, the center is a clearinghouse for referrals to community resources, such as senior day programs, pro bono legal assistance, support groups and organizations such as the Alzheimer’s Association and the American Parkinson’s Disease Association. A media resource center provides books and other materials related to caregiving.
The Leeza Gibbons Memory Foundation established its first caregiver support center, called Leeza’s Place, in Sherman Oaks in 2003. “When we began, we were focused on people with Alzheimer’s disease and their caregivers,” said Gibbons. “While that is still the biggest part of our community, we came to realize that the caregiving experience is the same whether it’s for a mom with memory loss, a husband with cancer, a child with autism or a sister with MS [multiple sclerosis].” For this reason, the foundation expanded its services to include caregivers coping with a broader range of patients.
In the decade since her foundation established its first care center, Gibbons said, she has learned “that sometimes courage just means trying it all over again one more time tomorrow; that there is no limit to forgiveness and that patience comes in an unending supply, but it often needs replenishing daily. I’ve learned that hope changes everything and a heart never forgets. These last 10 years have been a gift of epic proportions, allowing me to grow my own faith enormously. I take a tremendous amount of pride in knowing my mother’s legacy is kept so lovingly in the hearts of our communities.”
Gibbons advises caregivers to be “flexible and forgiving of yourself and others. Realize that there is strength in knowing your limits and that the best way to love the person with disease is to first take care of yourself… It is essential to get support, but sometimes that comes not from your biological family but rather from your logical family. Hold hands with that circle.”
Since I began caring for my mother, I have learned to be less hard on myself and to recognize that I am doing the best I can to help her. Although we initially argued about even the most trivial subjects, my mom and I have slowly forged a new relationship based on her acceptance of aging and my acceptance of her age-related limitations. And it’s good to know that there are places like Leeza’s Care Connection where I can find counsel, concern and camaraderie from others who are facing the same challenges.
For information about Leeza’s Care Connection at Providence Saint Joseph Medical Center (501 S. Buena Vista St., South Tower, Burbank), visit leezasplace.org/locLCC_Providence.html.