It’s been seven years since Marie Campilongo was thrust into the Alzheimer’s journey, as she puts it, caring for her 84-year-old husband 24/7. As practiced as she is, though, there’s not a day that goes by where she says she doesn’t learn something new in a role she was never trained to assume. “When you get the official diagnosis it’s like a kick in the stomach,” Campilongo, 82, said of her husband Frank’s disease. “So far it has progressed relatively slowly, and I’ve had time to adjust to the different duties, but you just learn as you go.” Hungry for even more resources than she’s accumulated on her own, Campilongo came to Liberty Station Saturday for the first of what will be an annual caregivers expo bringing together speakers and exhibitors addressing a multitude of issues, from hiring help and finding residential facilities to coping with dementia and the stresses of caregiving. The CaregiverSD community expo, which drew about 4,000 attendees, is part of a recently launched initiative by The San Diego Union-Tribune to connect family members with the support and resources they need to navigate a very challenging period in their lives. In addition to the expo, there is a new website, caregiverSD.com, serving as a comprehensive clearinghouse of information, resources and support for caregivers. After listening early in the day to a couple of speakers who shared their own caregiving experiences — and reminded the attendees they are not alone in their daily struggles — Campilongo said much of what she heard reinforced the life lessons she has learned in caring for her husband. “The one thing I took away is that one needs to learn all about the resources and to ask for help,” said Campilongo, who participates in a regular support group, “because to remain sane you can’t do it by yourself.” That was a consistent theme in the remarks by speaker Kristen Cusato, a former TV newscaster who left San Diego in 2009 to care for her ailing mother back East. After her mom, now deceased, was diagnosed with a form of dementia, Cusato acknowledged she made thousands of mistakes caring for her mother, but she also learned some valuable lessons that she calls her “caregiver bag of tricks.” Addressing her audience of mostly caregivers, she encouraged them to forgive themselves for the mistakes they will inevitably make. “Step away from the job of caregiving a little bit so you can breathe,” she advised. “You can’t do it 24/7; otherwise you will implode. Going through the emotions of caregiving is like a wave in the ocean, it will toss you around, create anger at what’s happening, exhaustion. “Embrace it, feel it, cry, yell and then get ready for the next wave because it’s coming. You have to stay strong but you have to take care of yourself and don’t do it by yourself.” At the conclusion of her remarks, one of the audience members asked her if she could offer any advice on how to deal with siblings who are reluctant to participate in the caregiving process. Monique Rhodes and sister Peggy Demery, sitting in the audience, nodded knowingly as the question was asked. The two North County sisters, who share caregiving duties with a third sister, worry that she doesn’t yet comprehend the enormity of the challenges ahead for their mother, whose physical mobility is limited since taking a fall a year ago. Her dementia also is worsening, Rhodes said. The two women had encouraged their sister to attend the expo, but she wasn’t interested, said Rhodes, who also worries about the financial toll their mom’s care will take. “I just want to get a little more understanding and resources,” Rhodes said of her decision to come to Liberty Station on Saturday. “How do you pay for some of this when you don’t have the money for what Social Security doesn’t pay for? I’d like to walk away with enough information to share with my sister who’s in denial, I think. “I want to tell her we’re not done yet.” lori.weisberg@sduniontribune.com (619) 293-2251 Twitter: @loriweisberg
About 4,000 people turned up at an annual expo for caregivers in San Diego. The CaregiverSD community expo at Liberty Station brought together speakers and exhibitors seeking to discuss and address a range of issues – from hiring help, to finding residential homes for those with dementia, to the stresses of caregiving. It was part of a initiative launched by The San Diego Union-Tribune to help family members connect to care support and resources. Among those attending was 84-year-old Marie Campilongo, 24/7 caregiver for her husband, Frank, who suffers Alzheimer’s. Campilongo said her husband’s diagnosis at first felt like a “kick in the stomach,” but added that a lot of what she heard at the expo reinforced the life lessons she had learned as a caregiver. She stressed that it is important to know about the resources available and to ask for help when you need it. Former TV newscaster Kristen caregiverSD.com was among the speakers at CaregiverSD, who left San Diego to care for her mother in 2009. Speaking about her own experiences looking after her mother, who was diagnosed with a form of dementia, caregiverSD.com encouraged caregivers to forgive themselves for any mistakes they will inevitably make. She said that going through the emotions of caregiving was like a “wave in the ocean,” creating anger and exhaustion. But advised attendees to “embrace it, feel it, cry, yell and then get ready for the next wave.” Information, resources and support for carers is also available on new website, Cusato.