Antonio M. Taguba says his life changed forever during a family reunion in 2006, starting with an announcement from his mother.
“She said she wanted to have a family meeting,” said Taguba, a retired Army major general, who lives in Alexandria. “We thought she was healthy ... but all of a sudden she told us that she was dying of cancer.”
Navigating the Caregiver’s Maze
Saturday, Aug. 29,
8:30 a.m. – noon
Fairfax County Government Center
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The family, which also included seven children and a physically disabled father with dementia, had not thought about long-term care for the aging parents who lived in Hawaii. Suddenly Taguba and his sibling were thrust in the role of caregivers.
“My siblings and I were in constant arguments,” he said. “I was going home to Hawaii every other month. Eventually I had to quit my job. Care giving is exhausting and can be very turbulent.”
In an effort to raise awareness of the need for advanced long-term care planning and the resources available to assist both caregivers and the elderly, Taguba, who is an AARP community ambassador, is sharing his story. He will speak at an event sponsored by AARP, Inc. and the Philippine American Foundation for Charities (PAFC) called Navigating the Caregiver’s Maze: Finding Support and Planning for Your Caregiving Journey on Aug. 29. The forum will bring together experts in geriatric care and representatives from organizations that serve the elderly and the disabled.
”The goal of this event is that participants will walk away with knowledge of all the resources that are available for them to help them on their care giving journey,” said Amber Nightingale Sultane, associate state director of Community Outreach, AARP Virginia. “Whether it’s support groups for care givers or adult day care, this area is rich in resources.”
Those in the field of geriatric care says that like Taguba, many caregivers can be unprepared for the undertaking and unsure of where to turn for help. “Sometimes you’re dealing with a caregiver who doesn’t know how to make an assessment of the needs of the person in their care,” said Grace Lynch, communications manager for the Fairfax County Division of Adult and Aging Services. “Sometimes you know you need help but you don’t know what you need, or you have a diagnosis but don’t know how it translates into a specific service.” Representatives from Fairfax County Division of Adult and Aging Services will be on hand at the Aug. 29 long-term care event.
Lynch says one tool that can help caregivers begin the task of sorting out needs is the county’s Aging Disability and Caregiver Resource Line: 703-324-7948. “When you call, you’re talking to a social worker who can help you assess the situation,” she said.
Safety and health issues are often the first sign that a parent or loved one needs help with self-care. “When you see that they’re losing weight or having trouble remembering things. When you see that the house is falling down around them. These are the basic symptoms,” said Andrew Carle, executive-in-residence, Program in Senior Housing Administration at George Mason University. “The biggest factor I always start with is whether or not they are safe?”
For seniors who have cognitive or physical impairments and cannot be left alone during the day, adult day care centers might be an option. Representatives from Fairfax County’s Adult Day Health Care will be available during the Aug. 29 forum.
“Adult day health care offers a lot of socialization which is so important to stave off some of the decline we see in the elderly,” said Jennifer Robinson of the Fairfax County Adult Day Health Care program. “The centers are full of activities to keep them stimulated. The therapists get to know the participants, their interests and abilities and plan programs accordingly. People do better when they’re not depressed.”
Denial and resistance, among both the caregivers and the person in need of care, are common hindrances in the creation and implementation of a long-term care plan. “The biggest thing we see and what takes the biggest emotional toll is the parent/child role reversal that takes place. This can be difficult to cope with,” said Amy E. Coren, Ph.D., J.D., assistant professor of psychology at Northern Virginia Community College in Alexandria. “What we really stress is understanding that the old relationship is finished and a new relationship must be established, where the previous parent is now an individual under your care.”
Coren underscores the fact that this is not tantamount to becoming a parent for the person who is in one’s care. "But rather, [it] creates a unique relationship where the caregiver is responsible for emotional, financial, and even physical support of the former parent … It's a subtle distinction, but important to make.”
Taguba believes that dynamic is one reason why the issue of long-term care is avoided, often until it is too late. “It’s a topic that we don’t want to touch because we think our parents are going to live forever,” he said. “But it’s part of a family cycle. Its never a good time to have to conversation, but it starts with a four letter word: love.”
“Adult children often rationalize [a parent’s situation] before they’re ready to accept that a parent needs help,” said Jackie Barnaby, a geriatric social worker in Bethesda, Md. “The danger in waiting too long is that you reach a point where you have to have an intervention.”
Another roadblock to long-term care planning is communication. “It should be done early and often, not left until the last moment or following a crisis,” said Coren. “Many families do not have great lines of communication and this can be difficult, but it is still important.”
“There’s a wide availability of resources,” said Taguba. “But it’s about having the motivation to use them and not waiting until the last minute.”