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    What It's Like to Be a Caregiver

    By Sonya Collins
    WebMD Feature

    (Editor's note: A few days after Coleen McKechnie was interviewed, her mother passed away.)

    Coleen McKechnie was 39 years old when she got the call from her cousin Tammy last year. "She said, 'Your mother is doing worse. It's like a switch has flipped. Can you come up here and help right now?'"

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    McKechnie's mother, Angela, was in the final stages of Huntington's disease, a progressive condition where your physical and mental abilities gradually get worse. "I couldn't not do it," McKechnie says. In short order, she put her house on the market, quit her job as a graphic designer in Austin, TX, and moved in with her mother and her aunt 500 miles away in the small town of Monett, MO.

    She joined the ranks of an estimated 44 million Americans who provide unpaid care to older or disabled adults. The unsung heroes of their families and the health care system, caregivers give a lot of themselves to carry out a labor of love.

    Good Days and Bad

    McKechnie hit the ground running when she arrived in Monett. "The night I got here, I was changing diapers, and I haven't stopped since," she says. While no child wants this role reversal, she sees a bigger picture. "About the time you think you can't take anymore, or you think it's just going to keep getting worse, it gets better."

    Things got worse and then better, in part because McKechnie adapted to each new turn in her mother's condition, such as not being able to feed herself or having a harder time speaking.

    But sometimes, what looked like a turn for the worse was only temporary. Bouts with flailing limbs that kept Angela in her bed were just that: fleeting bouts.

    Even the turn that Angela had taken when McKechnie's cousin called was temporary. "When I got there, she got better because I was there," McKechnie says.

    The symptoms she describes are specific to Huntington's disease, but the ups and downs are not.

    Sylvia Freeman of Durham, NC, cared for Sam, her husband of 40 years, full-time during his last few years of life with Parkinson's disease and Lewy body dementia. "One day he'd be fine, and I'd think his medicine was working. Then he'd fall or start talking nonsense, and be totally different the next day or hour." Sam passed away in 2005.

    The message, according to the two women, is to be flexible. "I never knew what to expect from day to day. I had to be used to making changes at the spur of the moment," Freeman says. McKechnie agrees: "It could change tomorrow. It could change next week. You just don't know. You navigate as you go."

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