UF makes resources available to caregivers nationwide
Sharon Roberson stood guard in her chair.
As the sole caregiver for her mother, a "very bright" woman diagnosed with Alzheimer's disease, Roberson stayed awake night after night, sitting at her computer desk. Alone.
When her mother woke up in the middle of the night, she was often confused, and she'd tried to run away more than once, a common problem for patients with Alzheimer's and dementia.
So Roberson browsed the Internet from her home in Bullhead City, Ariz., into the wee hours of the morning. And on one such night, she Googled Alzheimer's disease, more out of desperation than anything else, she said.
She came up with www.AlzOnline.net.
The Web site, designed to offer resources and create community networks for the primary caregivers of patients with Alzheimer's and dementia, is based in Florida and tailored to the state's caregivers.
But it was there, Roberson said, and that's all that mattered.
"The fact that I was at my computer in the middle of the night, at my wit's end, literally saved me," she said. "I finally had someplace to go where I could find answers to my questions, where people didn't think I was stupid for asking them."
www.AlzOnline.net, a free caregivers' support network and education center run by the Center for Telehealth in the College of Public Health and Health Professions at the University of Florida, offers Web and telephone connections and seminars to its users. Most are located in Florida, as the information and resources available often pertain to them.
But www.AlzOnline.net isn't just catering to Floridians. Roberson and her friends used it in Arizona, even more than she used any of her local resources.
"I did find a support group in the area, but when I got up enough nerve to go, it seemed the leader of the group was waylaid and unable to make the meeting," she said. "I pretty much ended up leading the group by asking the people there to share their stories. I was hungry for knowledge and guidance and the networking was good, but it did not feed my need at that time."
Roberson began turning to AlzOnline.net all the time. She tuned into seminars by Florida doctors, offered by AlzOnline.net. She signed on to AlzOnline.net chat rooms, networking and getting tips from other caregivers. Although living in a different time zone meant Roberson was not always in sync with www.AlzOnline.net's schedule of events, she found a way to work around it.
"Maybe I'd have to get up early, and maybe the timing wasn't always perfect, but in a way, it was perfect because I finally got the answers I needed. I finally got somebody who understood me," she said. "It was my only solace in sight."
Even though her mother has passed away, Roberson still promotes www.AlzOnline.net. She's been known to bring it up with perfect strangers when she goes out to dinner or advise customers in her husband's flower shop, Bullhead City Florist, to check out the Web site. So far, Roberson has garnered users in Arizona, California, Nevada and "any place I go," she said.
"We have been privileged to help caregivers from all around the country. The beauty of AlzOnline is that time doesn't matter. Difficult caregiving situations don't happen on a time schedule. AlzOnline is there when you need it, 24/7," said Jeff Loomis, coordinator of www.AlzOnline.net and the center's associate director.
Nationally it is reported that more than 5 million older adults suffer from a memory problem. In Florida the number is around 480,000, or 20 percent of the 65 and older population. It only makes sense that Florida is taking the lead to help caregivers of seniors with memory problems, Loomis said.
"Because of AlzOnline I was able to care for my mother as I hoped I could," Roberson said. "Without them I don't feel I could ever have accomplished it. She passed in my arms and I was able to be strong enough to get through it, in part to AlzOnline. The program gave me guidance and comfort and confidence in my abilities to care for her."