When dementia is stealing your dad

My father has decided to undertake a heroic project.

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  • My father is undergoing a heroic struggle. ("Heroic is a bit strong," he says, "but I am enjoying it.")

  • He has embarked on a writing project. Inspired in equal parts by the realization that he won't live forever—and by the work my husband and I do as life writing coaches—he has decided to write down some stories from his life.

  • Why is this heroic?

  • Because he's running out of words.

  • The Word Thief—Broca's Aphasia

  • Dad is a professional documentary filmmaker and writer and has always been brilliant with language. As a young would-be novelist, he wrote page after page of prose at lightning speed. Over the years, personal writing gave way to work and family. But now, at age 79, he feels a sudden urgency.

  • Dad has been recently diagnosed with Broca's aphasia. Broca's is a speech disorder (caused by injury to or deterioration in the limbic system of the brain) defined as "loss of the ability to produce spoken and written language." It is a symptom of encroaching dementia.

  • His comprehension and memory and sense of humor are perfectly intact; his problem is with expression. You know that feeling when a word is on the "tip of your tongue" but you just can't find it? It's like that, times 100.

  • "In short, it interferes with retrieving words from your brain on demand," he writes in the preface to his memoir. "Suddenly, in the middle of speaking, I'll blank on a word and the conversation will freeze while I struggle to find it. The funny thing is that it's still in my memory. I know what the word is, what it means. In most cases I can come up with the letter it starts with and the number of syllables it contains."

  • It's excruciating for Dad to see a fellow conversationalist's attention drift as the person waits for him to remember the right word. He hates to feel that he is boring someone, and so he becomes anxious, which makes the aphasia worse.

  • I ask him if written words come more easily. Not really, he replies; "words can also refuse to display themselves on paper." But there is less social anxiety in writing. In writing, he can take his time. He can leave out a word, come back to it later and see if it shows up, without the pressure of a real-time listener.

  • He's in a race against time to get these stories down before all the words leave him. As frustrating as this exercise must be for him, he is determined to keep writing. He has found some workarounds, some ways to trick his brain and use tools to fill in the gaps. It's slow going, but he cheerfully persists. That's what makes his effort, to me, heroic.

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  • Coping Strategies

  • Dad has developed ingenious ways of capturing ideas as they come to him, even as the words are elusive. He describes seeing memories unroll like a strip of silent film: he can perfectly envision the places and events of his life, some hilarious, others disturbing. If he can jot down one word or concept that comes to him in relation to the pictures in his head, it will be enough to remind him so he can replay the "film" at a later time.

  • When writing the story, if his brain comes up empty for a word, he can insert a substitute word or leave a blank space. Often, in rereading it later, the correct word will suddenly come to him.

  • He also keeps a thesaurus close by. If he can mentally chase down a similar word, even if it's not the elusive desired word, he scans related concepts in the thesaurus until the actual word he was looking for jumps out at him.

  • Words of Hope

  • Dad has had an interesting, somewhat unconventional life, a life worth writing about. He still has time, even if his efforts are slowed by having to doggedly chase down the elusive spirits of language.

  • "Broca's aphasia has made the task become slower and more tedious, but not impossible," he says. He has hope that he can finish before the aphasia mutates into Alzheimer's.

  • Keep it up, Dad, because your effort is an inestimable gift to me. And I can't wait to read it. I will appreciate every hard-won word.

  • Do you know someone who is suffering from the early onset of Alzheimer's? Share with them these tips to find their words to write their story:

  • 1. Buy a journal to write about your life experiences. 2. Keep a notepad and pen handy. Write down words related to the memory you're trying to find words for and add them to your journal at a later time. 3. Leave a blank space in a sentence and come back to it later. 4. Use a thesaurus if you are close to finding the right word but just can't quite get it.

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Tom and Alison Taylor have helped hundreds of people, businesses, and towns tell their stories in books and video. They are authors of the book “How to Save Your Life, One Chapter at a Time.” Contact us or see our blog at www.picturesandstories.c

Website: http://www.picturesandstories.com

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