Tag Archives: caregiver support

Eyes, sight, perception, dementia

Eyes are the main portal that ushers the wide world into our minds. Healthy eyes help us see the people and things that fill our lives with love, beauty, hurdles, and despair. But to perceive those things accurately, the brain must be a reliable interpreter. Dementia makes that impossible.

Fall Foliage

Between the Pond and the Woods

My mother has had eye problems for years. The first time she showed signs of faulty vision we were walking in the back yard. Leaves had fallen from a big elm at the end of the lawn. She pointed at them and asked, “What are those pink things?” Her comment alarmed me because in those days she could still function at a pretty high level. What she noticed on the ground was not pink — and she’d lived in Pennsylvania her whole life, raking countless piles of autumn leaves. She was showing the first signs of agnosia, a condition of not being able to name or recognize a common object. The condition of a caregiver witnessing this for the first time is called panic!

Seven years have since passed and we don’t get upset when Mom can’t explain what she sees. In addition to the agnosia, she now gets a chronic infection in her eyes from keeping them closed too much. When she is not truly engaged in an activity, she shifts into neutral and lets her lids drop. Closing the eyes prevents tears from cleaning them, which can result in dacryostenosis.

Apart from the infection, which we treat with a prescription ointment, Mom often comes up with wild notions of what she’s looking at. After hearing her talk a lot about “the children over there”, my sister finally figured out that Mom was looking at electrical outlets — two holes that looked like eyes resting over one hole for a nose or mouth. These are “the children” that visit Mom’s room. We thought she was seeing ghosts! A few days ago, Mom looked at the photo of the fall foliage posted above. She couldn’t find any trees or leaves there. For her it was a picture of “a rich man with lots of money.”

So hang on.  If you can get yourself past the panic stage, some of these things are truly hilarious!

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.