From the AlzAuthors Blog: Anticipatory Grief: Powerful Feelings for Alzheimer’s Caregivers

 By Harriet Hodgson

After my father died, my mother moved to Florida to be near her older sister. Two years later her sister died, and Mom felt lost without her. To fill her days, Mom went on a variety of trips, often with a friend. One day she called to tell me she was “out West.”

“What state are you in?” I asked.

“I don’t know.”

What town are you in?”

“I don’t know.”

“Well, where are you now?”

“I’m in a phone booth!” she replied in an angry voice. (Phone booths still existed then.)

Was my mother with a tour group? Did she have enough money? When would she be home? I didn’t have a chance to ask these questions because Mom blurted, “But I can’t talk to you now because the boat is going down the Colorado.” Then she hung up.

I stood in the kitchen, with the phone in my hand, and started laughing. Always interested in the world, I pictured Mom in a pith helmet, clad in waterproof gear, sitting in an inflatable boat with tourists, and shooting over rapids. Minutes later my laughter turned to tears. During our regular phone calls I realized the intelligent, dependable, funny mother of my childhood had become a different person—confused, impatient, and angry.

On the morning of my father’s funeral Mom had suffered a mini stroke. The strokes continued in Florida. When she was found wandering in a Sears store (Mom was looking for her car), I moved her to my hometown, Rochester, Minnesota. I found an apartment for her in an assisted living community. Mom was quite happy there, but, as the years passed, her dementia worsened. According to her doctor, Mom’s mini strokes added up to Alzheimer’s.

He didn’t order cognitive tests for her because, as he noted, “We already know the results.” Cell-by-cell, my mother was dying right before my eyes. Witnessing her decline was heartbreaking. I felt like a black cloud followed me everywhere I went. A friend of mine, who is a certified grief counselor, asked how I was feeling. I told her I was stressed and exhausted. “You’re going through anticipatory grief, and it’s very powerful,” she explained.

Her comment led to my research on anticipatory grief, and my research continues to this day. What is anticipatory grief?

Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Everyone goes through anticipatory grief, yet many have never heard the term. I decided to write a book on the topic and worked on it for a dozen years. I sent the outline, along with a cover letter, to my New York City publisher, and waited anxiously for a reply. Nothing. Finally, I called the acquisitions editor. Yes, she had read my letter and outline. “I don’t get it,” the editor said. “I just don’t get it.”

From the sound of her voice, I could tell the editor was young and hadn’t experienced anticipatory grief yet. There was no way I could make her “get it.” Still, the editor gave me some smart advice: get a medical co-author. I followed her advice and contacted Dr. Lois Krahn, a Mayo Clinic psychiatrist who lived in my neighborhood. Dr. Krahn was willing to read the manuscript, vet the contents, and contribute to it.

With patience and skill, Dr. Krahn wove her points into the existing manuscript. We tried to find a publisher, but struck out. The traditional publishers weren’t interested in grief, so we turned to CreateSpace, Amazon’s publishing company. After the book was released Dr. Krahn called me. She said she hadn’t thought about anticipatory grief before working on the book. “Now I realize it walks into my office every day.”

Anticipatory grief may have walked into your life. Smiling Through Your Tears may be just the help you need. It focuses on anticipatory grief’s uniqueness, grief of terrorism, anticipatory grief as a reaction to change, factors that shape this grief, symptoms and stages, responses to anticipatory grief, complications, coping tips, and how early grief may help you. Each chapter ends with Healing Steps you may take.

I give workshops about this form of grief. At the end of a workshop an audience member thanked me for doing it. “I didn’t know what was happening to me,” she admitted. “Now I know and can give it a name.”

Purchase Smiling Through Your Tears on Amazon 

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