Tag Archives: caregiver stories

Books That Tell the Dementia Story

Way back when my mom was first diagnosed with dementia, I searched the Internet and scoured stores for books to help me understand the disease. There were not many good reads available at that time. Though more have appeared in recent years, I now believe that the complexities of dementia force many authors to focus on tiny slices of the story.

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Still Alice, by Lisa Genova, attracted many readers partly because it was one of the first novels to address the topic of Alzheimer’s. From a writer’s perspective, it’s an amazing book because the author had a terrible time finding a publisher. She had to self-publish her book and sell it from the trunk of her car before a publishing house finally took it on. Her faith in the book was well-founded since it sat unchallenged on the New York Times Bestseller list for 40 weeks!

All Gone: A Memoir of My Mother’s Dementia  by Alex Witchel is a more recent effort chronicling a writer’s perspective on her mother’s dementia. This book describes the emotional journey taken by the author as her mother’s dementia resists efforts to defeat it. This book has gotten a lot of press, partly because the author writes for the New York Times.

Last month Cleaver Magazine asked me to review The Faraway Nearby by Rebecca Solnit, an award-winning writer. Many elements of this book are fascinating, but its treatment of dementia is pretty unsatisfying. The wild range of stories in the book mutes the author’s emotional response to her mother’s dementia. If any life event triggers strong emotions, its got to be the challenge of facing this illness.

Books that truly illuminate the nature of dementia have the power to help patients, families and caregivers struggling with the disease. If you’ve read something great or have a new title to recommend, please post your suggestions here. Inquiring minds need to know.

Dementia Foils the Best Laid Plans

Some ideas nag at you until you finally act on them. Last September I was angry with myself because I never got around to driving my mom to the beach for a day. When she was younger, she loved the ocean.

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Every year she spent a week at Cape May before the Memorial Day tourists arrived. She returned again after the Labor Day crowds were gone. Over the course of her life, she went on whale watches and dolphin cruises around the Atlantic and North Pacific. Though she didn’t learn to swim until she was over forty, she was mesmerized by water.

One of Mom’s favorite expressions was, “Timing is everything.” If I had listened sooner to that little voice telling me to take her to the Jersey Shore, things might have worked out better. Instead, I took her this past week and the experience defied all expectations — in a negative sort of way.

I honestly thought I had it all figured out. Ice, cooler, water bottles, car snacks, beach chair, SPF 30, blanket, towels, sunglasses, etc. I played old Beatle songs on the drive to New Jersey and got her clapping along. By the time we arrived at the beach, she could almost sing the entire line: “We all live in a Yellow Submarine.” Success ended the minute we got out of the car.

Walking the plank ramp to the boardwalk took nearly 20 minutes. She just couldn’t see or understand how to walk on the boards that had once been so familiar. My arms were loaded with stuff, so I propped one of her hands on the metal bannister and took her other one in mine. Two very kind ladies stopped to carry some of my paraphernalia so I could focus my energy on helping mom. She barely made it to the railing where the ocean was visible at last. I sat her down to take a rest, then tried to figure out how I could possibly shorten her trip back to the car. I was so grateful for the help of passing strangers who sensed the weight of our distress. Finally, I got Mom to the car and took her to a beach restaurant for lunch.

From there she could see the waves and hear the seagulls. But she hated the cool breeze that was such a treat for all the other customers. Her meal of fresh fish was unfamiliar and I had to coax her to eat tiny bits of the flounder and potato salad she would have wolfed down in years past. Nothing about the day resembled the dream I’d harbored for so long. No bliss, no smiles, no final happy memory of a day at the beach with Mom.

By the time we started back, I felt like the demented one. My dream was too selfish and didn’t fully account for my mother’s limitations. About halfway through the drive home, she was happy again as the Beatles played. When one song ended, she turned to me and asked, “About the water…. the time with the water? Is that over now?” — as if she wanted to go back again. I thought I would scream. But I didn’t. I nodded my head and cranked up the Beatles. They were four guys from Liverpool with the world’s best sense of timing.