On Writing a Book About My Late Husband’s Dementia

[Carol Noren Johnson gives a glimpse of what it’s like to write and then publish a book on marriage, dementia, loss, grief, hope and prayer.]

During the illness of my late husband, Herb Johnson, I kept a blog of what I was experiencing and learning–what was his dementia/Alzheimer’s and how could I cope.  Hu

Carol and Herb

bby never knew I had that blog.  Prayer was a big factor. Early on when we prayed together, Herb asked the LORD to “give me a shot of joy”! Prayer and answers to prayer kept us going, even when Herb prayed the same prayer over and over again as his thinking declined.

At the same time Herb was going downhill, I took seminary counseling classes, free to church members. I sought out biblical counselors such as Dr. Howard Eyrich and my papers for the seminary were peppered with footnotes about dementia. Later after Herb died, grief counselor, Rev. Carl Mahn, helped me with the last chapter on grief that the seminary wanted in my dissertation. What I was learning could get me an Ed.D in biblical counseling—perhaps.

Reality Struck

As a senior citizen and a widow who had now moved from Florida to Huntsville, Alabama where I have family, how would I manage traveling to defend a dissertation? I went to Florida twice and would have to go again. Did I need a degree? Maybe not. But speak on the topic? Bring it on! I have been in Toastmasters for years!

I decided that as a senior I better finish a book that could help others. I had some time to revise my dissertation draft when I substitute taught. There was time in my schedule. Middle school and high school students would often have excellent behavior for me here in Huntsville, Alabama, so that I would rap for them at the end of the period.  Many knew I was writing a book.  Didn’t think I had time to find a real publisher.

So I invested money in a self-publisher, Xlibris, who gave me a discount perhaps because the main manuscript was done.  $900. They told me I could have twenty-five pictures and it was fun to provide them with twenty-five pictures—not something my dissertation would have had.

Problem one. Footnotes from the incomplete dissertation needed permissions that took a lot of time. I learned that poems and hymns needed permission, but small sections of other books did not. I used the New King James Version of the Bible and noted that at the beginning of the book. Our couple friend’s names were changed to “Sally and Jake” and they gave permission to have part of their story in the book.

Problem two. Money. Xlibris made the book available on Amazon and Barnes & Noble. You can get the book as an eBook, hardback or paperback in anyone of three venues. Xlibris marketing wanted more money from me to market the book—to get me on TV, etc., or to sell the book to a “real” publisher. No, I decided. No money for marketing. I marketed my YouTube channel, MC AC The Rap Lady, myself. If 8000 plus people have viewed my rap “Rocket City Ditty”, then maybe the right people will buy the book.

Besides, I want this book to help, even if it doesn’t make money. We need more than deacons in the church to help with this book. As the back cover says:

This book is biographical, practical and theological. It covers strategies to help Christian counselor, pastors and caregivers and friends minister to the needs of care receivers. Behaviors of dementia care receivers and others are detailed, as are strategies for caregiver stress and facing the mourning that follows.

The day I first showed students the book, Getting Through the Dark Days of Caregiving, they clapped louder for me than when I rap!

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5 Responses to On Writing a Book About My Late Husband’s Dementia

  1. Jeannie Prinsen says:

    Wow, this is so inspiring, Carol. Glad to read about what you have done. I’m sure your book will be a gift to many people.

  2. betty says:

    Visiting from Carol’s blog; enjoyed her book and this guest post of hers. She has written a valuable resource for caregivers, medical providers, pastors, church support staff, etc.


    • Carol Noren Johnson says:

      Betty, you were one of my first blogger friends to encourage me with first the dissertation and then the book. Then you bought the eBook and to read it! Thanks so much. I know you will be prepared should your hubby or someone else in your life get dementia.

  3. Carol Noren Johnson says:

    It’s cool that an overseas missionary whose husband has Alzheimer’s is using my book; she doesn’t have a support group in the country she is serving. Also I am being interviewed on the problem of guns and illusions which I wrote about in my book!

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