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.

Advertisements

The Myth of Retirement

Once upon a time, I believed what I saw on TV. When I heard the term “retirement,” it brought a most pleasant time of life to mind. I watched my parents get there. I was happy for them when they’d arrived. Having worked hard all of their lives, it was nice to see them living it up and enjoying themselves.

The myth of retirement looks something like this:

  1. You stop working
  2. Start spending money
  3. Spoil your kids and grandkids
  4. Travel
  5. Do all the things you dreamed of doing when you were working and couldn’t
  6. Die peacefully in your own bed
  7. Angels escort you to heaven; cue heavenly choir

Unfortunately, for most people, this is fantasy. If you’re lucky, and you managed to put some money away, then steps 1 through 5 are certainly a possibility. However, there’s a significant step that no one wants to consider before you get to 6 (and your step 6 may not be “peaceful” or “in your own bed,” either).

For the vast majority of us, there will be a period of 20 to 30 years of “post retirement.” This is that sad time when we’re no longer able to travel at will and do whatever we want, because we’re sick or disabled. We are seeing doctors more than our loved ones. The time and expense of these visits puts a strain on our assets and our energy reserves.

If this is bumming you out, I apologize, but, dear reader, you need to wake up. Very few people have the luxury of going to bed healthy and happy and simply not waking up.

So here’s a suggestion: read a book that will introduce you, gently, to some harsh realities. Sit with the feeling for a little while. Then take action. Review the 8 Topics (they’re in the book). And if you want help from there, ask for it. Don’t myth out.

“You’ve Got to Write a Book!”

For years, people would tell me I had to write a book. And I used to smile and nod and say “some day.”

The funny thing is, I write all the time. From the time I was a tormented geek in public school, I kept diaries and journals. In my teens, I wrote songs. “Take your broken heart and turn it into art” was a concept I always embraced.

When my father got sick (2003 – 2004) I saw a therapist who suggested I “journal” as an outlet. It was a great (if obvious) idea. I kept a book of ravings and doodles.

Caregiving my mother in the years following my father’s death was particularly challenging because I did it on and off for years (2004 – 2015). When I was confronted with being alone with her for the last time in her apartment in Florida, I felt like writing a journal was necessary for my survival. This time, I decided to blog. I thought what I was learning could have value for others, so I put it out for the world to see. I had some followers. And the experience was cathartic.

The blog ended when my mother did, in April 2015. Two years later, having some distance from the content, I was able to read it objectively. I liked it. And I’ve got pretty high standards.

I thought “Wow. My book is already written!” It needed some massaging and tweaking, but I felt like I had a great starting place.

So I got to work and put together a manuscript. Spending the first 5 months of 2017 caregiving my husband, I had time at odd hours to work on it. I shared the first draft with my niece, Jessica, who is a very smart, savvy and no-BS gal. She loved it and remarked that she thought people her age (mid-20s) would enjoy it. That was all the encouragement I needed.

I committed to getting the book published in 2017. Taking Jess’s feedback, I trimmed and smoothed some more. I bought a copy of “The Writer’s Market” and devoured the advice. I went to bookstores to do market research. I scanned the web for other books like mine. (And I can state with some confidence, there is no other book quite like mine).

Having attended my share of business meetings, I am on the lists of many coaches and lecturers. One of these fine folks blogged about his experiences writing a book and getting it published. He spoke of a type of professional I had never heard of before: “Book Shepherd.” These are professionals who know the current publishing landscape and help new authors find publishers. This fellow had gotten an offer on his own, but didn’t feel good about it. Connecting with his Book Shepherd, he soon had a better deal.

Why couldn’t I do the same? I reached out to this “Book Shepherd,” Debby Englander, and she invited me to send her what I had. I did. She loved it. She sent me a very fair contract. I signed it. She wrote a “mini-proposal” to a publisher she thought was a good fit. Turned out, she was right. Twenty days after we connected, I had a deal.

I even got to meet my publisher. Post Hill Press has offices in Brentwood, TN. They’re just 5 minutes from my dear friend who lives in Franklin. I already had plans to visit in August, so it was a very easy meeting to arrange.

My book, “Dementia Sucks; A Caregiver’s Journey with Lessons Learned” will be unleashed upon the world in May. My story of love, humor, heart-break, resilience in the face of a complex and cruel system and dogged insistence on the need for planning will be available everywhere fine paperbacks are sold.

Advance orders will be encouraged. Prizes will be offered. And the best gift of all, a great story, well-told, will be available for your consideration very soon. Follow this blog to be notified, or better yet, join the “family.”  There’s even a Facebook page for you to “Like.” Thanks for your support!