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    12
    Dec
    2012
    11:15am, EST

    Rev. Dale Susan Edmonds answers your questions about caregiving

    It is difficult for families to talk about death and dying, but by proactively resolving complicated end-of-life issues it's possible to stave off future financial worries and stress. NBC's Dr. Nancy Snyderman reports.

    As our elderly relatives age, families grapple with all kinds of issues from end-of-life care to funeral costs.

    On Wednesday "NBC Nightly News" hosted an online chat with the Rev. Dale Susan Edmonds, a hospice chaplain and founder of the caregiving website Talk Early Talk Often. 

    Do you have questions about how to care for your aging loved ones? Do you have a caregiving plan in place? If you're wondering how to assess the needs of your elderly relatives, Edmonds offered tips below based on her experience working with the families of senior citizens.  

    To review a transcript of the chat, please click on the box below. 

    Please note, this chat was moderated. We answered as many questions as possible during the half-hour time frame. 

    For more on caregiving, please visit the AARP resource page, and learn more tonight during Part 2 of Nightly News' caregiving series. You can watch Part 1 here. 

    The Field family explains their approach to end-of-life conversations, and how they made difficult decisions about the future.

    Geriatric care manager Debbie Reinberg explains why children should have end-of-life talks with their parents and put their wishes in writing sooner rather than later.

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  • 11
    Dec
    2012
    5:24pm, EST

    Caregivers neglect their own health in order to look after others

    Americans are living longer than ever before, which means baby boomers are doing double duty caring for both parents and children. NBC's Dr. Nancy Snyderman reports.

    By Linda Carroll

    Each morning, 48-year-old Troy Prater starts his day by getting breakfast for his teenage triplets. On weekdays he checks homework and then hurries them off to school. Then it’s back home to take care of his mom, Ella, who suffers from Alzheimer’s disease. Life, Prater says, “is organized chaos.” 

    Prater is among the millions of Americans who have stepped up to do the right thing and take care of family members who can’t take care of themselves. Unfortunately, most caregivers are spread so thin that they don’t have time to take care of their own needs, NBC's Dr. Nancy Snyderman reports.

    “Caregivers don’t go to the dentist; they don’t get mammograms or annual checkups,” says Melissa Gartenberg Livney, a clinical
    psychologist with the PENN Memory Center at the Perelman School of Medicine at the University of Pennsylvania. “So they get sick.”

    Even worse, Livney says, “there’s some evidence that this kind of stress can contribute to the onset of dementia" which is why she and others are trying to encourage caregivers to get help, to find ways to take breaks, and to make and keep their own doctors’ appointments.

    A single father and sole caregiver to his mother suffering from Alzheimer's, Troy Prater is one of a growing number of caregivers providing care to two generations. 

    How many people have stepped up to take care of a family member?  

    One survey found that nearly one third of American households had someone serving as an unpaid family caregiver. That adds up to almost 40 million households with a caregiver present, according to the 2009 survey conducted by the National Alliance for Caregiving in conjunction with the AARP.

    Many of those caregivers are dealing with Alzheimer’s, which Livney says can be incredibly stressful.

    "Alzheimer's disease is 10 or 15 years of slow and steady loss of the person you once knew," she says. "Caregivers often suffer in silence and feel guilty when they don't feel up to the work."

    Currently, there are 5 million Americans who have been diagnosed with the disease, says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association. “And we estimate that there are 15 million people caring for them.”

    Unfortunately, the number of Alzheimer's patients is growing. The Alzheimer’s Association estimates that there will be 16 million Americans with the disease by mid-century if nothing changes. And that means there will be even more of us taking care of spouses and parents suffering from dementia.

    Prater, who juggles caregiving along with his normal responsibilities as a dad, acknowledges the dual roles can be very taxing.

    “I’m running on adrenaline,” he says. “I’ve lost quite a few pounds.”

    What's the answer to getting caregivers to care for themselves?

    People like Prater need to ask for help, Kallmyer says. But most seem to feel that caregiving is something they need to do on their own. And that's a setup for disaster, she says.

    “When you’re taking care of someone over a period of time, you can’t just soldier on,” Kallmyer says. “At some point your health will be impacted and that will keep you from being the best caregiver you can be. We often ask people, ‘If you get sick and land in the hospital then what is going to happen?’”

    Kallmyer suspects that the urge to go it alone is part of the American character. She’d like to see that change.

    So would Livney.

    "[Caregivers] need to allow themselves to not be perfect," she says.  

    They also need to learn to look after their own needs.

    “People need to give themselves permission to take care of themselves,” says Livney. “That’s what we focus on. We don’t spend much time talking about the disease and functional aspects of caring for someone with dementia. We try to help people understand how to take care of themselves."

    The Alzheimer's Association's Maria Carillo describes the difficulties the disease poses not only to those who suffer from it, but to caregivers. 

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Linda Carroll

Linda Carroll is a regular contributor to NBC News. She is co-author of the new book "The Concussion Crisis: Anatomy of a Silent Epidemic.”

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