How “Dementia Sucks” Got Published

Even as a young girl, I dreamed of being a published author. Over the years, I’ve written a lot of stuff, simply because it’s my nature to write. I also have this habit of wanting to share solutions when I find them, so I have spent considerable time teaching and educating as well.

My subject matter has varied, because my life has offered a number of “teachable moments.” When I was a graphic artist, I learned a lot about design and the technical aspects of taking an idea from brain to computer and then figuring out how to make it translate to ink on paper (and later, as web content and video). I taught at companies, for associations and as an adjunct professor at institutions of higher learning. I even wrote most of the questions for the Adobe Certified Experts exam for Illustrator CS3.

The caregiving phase of my life, when I devoted a great deal of time, energy and resources to helping my aging parents, was nothing I had anticipated. When my father got sick, I was taken by surprise. My parents were living in Florida, and while we “visited” frequently by phone (I live in NJ), everything seemed fine until I saw my father in person in 2003. Yes, he did a great job of covering up is infirmities. I realize that I was also complicit in his deceit: denial is a very powerful defense mechanism, and I didn’t want to believe my father was as sick as he was.

Losing my father in a relatively short period of time (just over a year) was painful, but illuminating. I learned a great deal about my parents’ situation and what was required in order to effectively advocate for my loved ones.

My mother lived on her own in Florida after my father died, but my husband and I spent our vacations visiting her, helping her, making sure her needs were addressed. When her cognitive decline became evident, we invited her into our home and I began taking care of her hands on.

The following five years were extremely challenging. Living with a parent when you are an adult is unnatural. Dealing with a person whose cognition is failing is one of the hardest things a person can do. They are still the person who drove you nuts in your teens, who second-guessed you as an adult and is undergoing changes before your eyes. They will make you question your own sanity while they are losing theirs.

Journaling was a natural activity for me to combat the insanity I confronted each day as my mother’s caregiver. At one point, I brought her back to her apartment in Florida to sort through her clothes and bring back items that she could use in New Jersey. It was her last trip to her last independent domicile. And I was all alone with her. So I started a blog, where I recorded my ravings and put them out to the world in case someone, somewhere, might find value in my perspective and the things I learned along the way.

My mother died in April, 2015, and I no longer needed to journal about caregiving. I stopped blogging.

A year after her death, I revisited my blog and was able to appreciate what I’d written as a reader might. I found myself enjoying the ride. I was pleased with the calibre of the writing, and I was glad to have a record of all we had been through. So much had become blurred in the heat of crisis.

And I thought “The book everyone has been telling me I need to write already exists.” It just needed some polish.

So I grabbed all the blog posts and got to work cleaning it up, discarding things that might hurt living people and turning it into a manuscript.

Then my husband, Bob, got sick. In January, 2017, Bob landed in the hospital with several life-threatening conditions. I was thrown back into full-time caregiver mode. I couldn’t stay focused on building my business. But I could work on the book at off hours, mostly at night when I couldn’t sleep.

After five months on disability, Bob improved sufficiently to return to work. At a family get-together, I saw my niece, who is a copywriter for a well-known media agency in NYC. I told her about my book and she asked if she could read it. Could she? I sent her a PDF to read.

She got back to me quickly with positive feedback. (She is not one to offer praise unless its warranted). I was encouraged to go forward and committed to finding a publisher.

I set about doing traditional market research. I purchased a copy of “The Writer’s Market” and began crafting my pitch letters, looking for the right publishers. I searched for books like mine. And then I received an email.

A fellow to whose blog I was subscribed wrote about how he got HIS book published. He had self-published his first book, but he wanted a publisher for his next work of non-fiction. He had gotten an offer, but it was less than ideal. And then he read an article about “book shepherds” in the San Francisco Book Review.

The first expert cited in the article was the person the author contacted. He happily reported that this wonderful resource helped him to find a much better deal with another publisher.

And then I thought “Why wouldn’t I contact her?”

So on July 5th, 2017, I sent an email to Debra Englander, explaining who I was and what I hoped to accomplish. She asked me to send her what I had, and we would talk Friday.

On that Friday, we spoke and she told me she loved my book and thought she had a publisher who would be interested. I was shocked, but pleased. What was next?

She would send me a contract. She would write a “mini proposal” to the publisher and see what they thought.

I signed the contract, mailed it with my check and hoped for the best.

Twenty days later, I had a deal with Post Hill Press. And they would publish it in May 2018.

I worked with the editors. They created a cover I absolutely loved. Together, we honed the manuscript into a real book.

In April 2018, I received the first copies of the book. Holding the actual product in my hands was a thrill that’s difficult to describe. On April 29th, I gave a book talk at a new dementia home in Paramus. On May 15th, 2018, the book was out for all the world to see, and I delivered a talk to a women’s group I belong to.

Since the release of the book, almost a year ago now, I’ve learned a lot about the publishing world as it exists today. I have promoted the book at bookstore talks, podcasts, TV shows, blogs, webinars and more. I am evolving my business toward professional speaking and training. The real revelation was that getting published wasn’t the finish-line; it was just the beginning.

Gratitude for the gifts of my journey permeates my life. Being able to use my experience to help others is truly gratifying. There’s a lot more to do, but having the book out gives me credibility and a platform to keep disseminating the message: “Don’t Walk the Caregiver Road Alone.”

If you’re an aspiring author, I encourage you to find your voice, find the courage to share it with others, and take pride in your accomplishment. Writing a book, however you do it, is not easy. Showing it to others requires courage that relatively few possess. But if you have something to say, the act of documenting your message is cleansing. The act of sharing it can be world-changing, even if it’s for just one other person. And that’s a gift that only you can give yourself, and to the world, if you dare.