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Fiction Tells Real Stories

Resources for Alzheimer’s family caregivers

By Kae Hammond

“So now what do I do?” “Why are they behaving this way?” “Where do I find answers to all the questions I have?” These are outcries I hear from family caregiver/partner clients and audiences regularly. In addition to providing them a general overview and explanation about particulars, I offer my recommended reading list culled from the bookcases full of books I have read on these subjects over the past ten years.

Fact-based knowledge is required for families facing or living with Alzheimer’s or other related dementia (there are 85-90 types).  Fear is our greatest enemy and fear is based on ignorance. To successfully and healthfully live with these diseases, a family care partner needs to read, listen and learn to be informed and ahead of the monster’s next move. 

Here are some excellent books that provide professional insights and guidance and unravel many mysteries.

The Alzheimer’s Action Plan, The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems by P. Murali Doraiswany, M.D., and Lisa P. Gwyther, M.S.W., is on the top of my list for anyone dealing with mild memory loss or early stage Alzheimer’s to help preserve the highest possible quality of life, as long as possible.

The 36-Hour Day by Nancy Mace, M.A., and Peter V. Rabins, M.D., M.P.H., is often considered the bible for families living with Alzheimer’s or other dementia.  A word of caution—Dr. Rabin shared with me that too many readers of the book anticipate that everything he and Ms. Mace address will come to pass with their loved one and they live in fear and high anxiety.  So a reminder, this is ‘across the board’ information.

I have highly recommended spouses read Jan’s Story, Lost to the Long Goodbye of Alzheimer’s by Barry Petersen, his courageous and gut-wrenching personal love story. What makes this a must read for spouses especially is that Barry lifts the veil from the social legacy which partners of spouses face.

Talented authors have woven tough subject matter into engaging fiction that addresses situations that may be in your future due to these diseases. 

Welcome to the Departure Lounge—Adventures of Mothering Mother by Meg Federico is a bittersweet, highly enlightening story of a mother’s decline and eventual death and a daughter’s determined effort to make this difficult process as dignified and decent as possible.

I couldn’t put down Auburn McCanta’s award-winning fiction, All The Dancing Birds; nor could two of my friends.  And this list should also include Still Alice by Lisa Genova; read the book or watch the movie on Netflix!

All of our lives are really made up of moments.  Jolene Brackley wrote Creating Moments of Joy for Dementia and Alzheimer’s Caregivers—Family Members and Professional Caregivers.  I kept this journal on my nightstand for several years, and it was a blessing for me, as it has been for thousands.  It’s another must have.

Kae Hammond is founder and president of Dementia Help Center and author of Pathways: A Guidebook for Dementia & Alzheimer’s Family Caregivers. She is a family caregiver coach, workshop leader, advocate, facilitator, keynote speaker and radio talk show host. For more information, call (877) 699.3456 or visit www.dementiahelpcenter.com.

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