I knew little about dementia back when my grandmother began using a kitchen pot for a commode. Or when my dad began wailing, "Oh why didn't anyone tell me?" on the day after my mother's funeral, because he'd already forgotten she died.
So how did I wind up writing a guide to Alzheimer's care? I followed the motto I've used for my entire career covering health and family for national media: “Write what you DON’T know.”
That's how you find out.
Back when firstborn balked at toilet training, I was lucky to interview Dr. Benjamin Spock himself. As a contributing editor of Parenting and Baby Talk while I raised four kids, I quizzed gurus-of-the-moment like T. Berry Brazelton, Richard Ferber, Sheila Kitzinger, and Penelope Leach. I tracked down researchers behind the latest studies for my Woman’s Day "Momfidence" column. I wrote a parenting book series for Time Inc. and The Happiest Toddler on the Block with top baby doc Harvey Karp.
It’s what I do: Find the best experts, ask the right questions, listen, and then organize and share their ideas in ways that help laypeople.
By 2007, countless parenting guides had been written, but surprisingly little on practical dementia care. That was the year I became an editor at the first big eldercare website, Caring.com—and coincidentally all heck was breaking loose among my older relatives.
A zillion interviews, articles, and blog posts about Alzheimer's later, plus a zillion encounters with my own family members' memory loss and behavioral changes, I knew I had to collect the best of this collective wisdom in a package that could help the millions of others who are in the same straits.
That's ultimately why I wrote Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers.
I wanted to give others the insights into WHY people act the way they do.
I wanted to share truly practical strategies for what to TRY in response.
And because I knew how long on stress and short on time that family caregivers are, I wanted to present all this in a format that was accessible and quick-to-read.
Turning intentions into manuscript is one thing. Then you cross your fingers and hope it really does help someone else.
And…you hear from a dementia-care operator who calls the book her new hand-out guide for clients, "every bit as good, if not better, than The 36-Hour Day, long considered the Bible of dementia care."
You get emails asking to reprint parts in newsletters put out by respected Alzheimer's centers or hospice programs.
You give a talk and a shy woman comes up to say, "Thank you for saying it's okay to be resentful sometimes, I'm just a stressed-out daughter and I get so tired of everybody calling me a saint."
Alzheimer's and other dementias don't just take down one person. They can take down a whole family. That's why every 5-star Amazon review makes me equal parts thrilled and melancholy. So many families!
Each reader interaction reminds me how wide and virulent and sucky this terrible condition is. And how anything each of us can do to help one another is like throwing a life preserver.
I toss my life preservers in tribute to my dad, to my Gram, to my mothers-in-law (plural, as I've remarried and they both had dementia). My 95-year-old father-in-law lives with us now and has developed new dementia symptoms, things I'd written about previously but hadn't actually experienced.
So now I'm revising Surviving Alzheimer's to update it and include even more stories from the best minds in dementia caregiving, from the academics and doctors to the social workers, psychologists, and countless family caregivers like myself. I love the people I've met and—in perhaps the only silver lining this disease brings—been endlessly inspired by their soul-saving wisdom.
About the Author:
Paula Spencer Scott is the author of SURVIVING ALZHEIMER'S: Practical Tips and Soul-Saving Wisdom for Caregivers, and has written or co-authored 12 other books on family and health. Currently the content chief of Kinstantly, her articles have appeared in AARP Bulletin, Parade, Caring.com, Woman's Day, WebMD, Newsweek, Next Avenue, Parenting, and elsewhere. She's a Journalists in Aging fellow of the Gerontological Society of America/New America Media.
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