Darcy Thiel Talks Publishing

If you’ve been following the Industry Friday series, you are familiar with guest blogger Darcy Thiel. Darcy has written a book about losing her husband to cancer in 2010 and up until now she and I have been discussing our experiences with caregiving (her interview with me is here http://helpforhealing.wordpress.com/2013/03/02/guest-blog-part-2/). Today we discuss the process of writing the actual book and getting published. The timing couldn’t be more perfect because tomorrow is her book’s launch party! I’m very excited for her.

Q. What has been the most challenging aspect of writing your book Bitter & Sweet?

A. It feels sometimes like “grief brain” is permanent. So accomplishing anything can be hard on some days, much less a huge project like writing a book. Two things were hard. One thing, were the days when a wave of grief hit. I could talk/write/process for days and even weeks like I was just telling someone else’s story. Then for no reason that I could identify, it would be a crying, grieving day and the subject matter was larger than life. The second part was learning new things. I would have given up at least a trillion times if my dear friend Brigitte wasn’t working with me full time. She does all the research and information finding. She has the patience of a saint coupled with a brilliant mind!

Q. How did you secure publishing?

A. We have actually “self-published”. First, we had to form a publishing company, which meant forming an LLC. It is called Baby Coop Publishing, LLC. Once you do the research, it’s tedious but not difficult. You fill out forms and then do legal notices in the paper. Total cost is about $350. After that, we did our research (ok, Brigitte did) and came up with what we thought were the best options. Lightning Source is the company that distributes our softcover book. All of the files were downloaded to them. They have certain companies they distribute to, but it’s most of the biggest in the industry. When they get orders, they print and ship. It’s called “print on demand.”

For the ebook versions, we went with a company called Book Baby. We are still in the process of downloading and revising with them. I thought this would be easier, but it has different challenges. Every reader (Nook, Kindle, Kobo, etc.) looks different. So it’s very hard to design something that looks good in every version. We are hoping to have that released within another two weeks.

Q. What do you hope readers will get out of reading your book?

A. My dream is that my book will be useful and helpful to people in the same way that other books helped us. You have listed a bunch of books and what you have gotten out of them – I’d like to be on that list some day. For a person struggling with cancer, they can find inspiration in the way that Tim dealt with his illness. For a person handling the tasks of being a caretaker, it is full of helpful ideas of how to be a patient advocate. For loved ones and family, it is full of practical ways of how you can truly be a support to the people you care about.

Q. What do you hope to achieve with your book?

A. The previous question answers the more spiritual goals of the book. On a practical level, I would love to pay off the mortgage of the house before my social security runs out! But the reality of how much money you make on a book is very small indeed. When you realize how many books you have to sell to really make a living, it’s almost impossible.

A much for practical goal for me, is that I am hoping that the book will help generate more referrals to my counseling practice. That is my main profession and passion and I will be doing that for many more years than I will be writing books.

Thank you, Darcy, and good luck tomorrow!

For more info on Darcy Thiel, please visit her at
http://www.marriageandfamilycounseling.net
http://www.helpforhealing.wordpress.com
http://www.linkedin.com/in/helpforhealing

The very touching video trailer for her book is also available here: http://youtu.be/Xapeagk_5tE

Happy creating!

Confessions of a Former Caregiver

There are certain anniversaries that are tough to deal with in the first few years of grief (if not longer). Birthdays, wedding anniversaries, Valentine’s Day, Mother’s Day, Father’s Day, Thanksgiving, Christmas, New Years and so on. For me, this time of year (January/February/March), brings back many painful memories as well as some good ones.

During these months two years ago, my late husband Kaz was deteriorating in mind, body and spirit. He had suffered a motorcycle accident several months prior and was still very depressed. The accident had rendered him weaker on the left side of his body. He could no longer ride, write, drive or work and he had to walk with a cane. For a man who had been an avid motorcyclist for over half his life, who loved skate and snowboarding, who prided himself on his independence, and who had a passion for speed, it was nothing short of devastating. I think the accident might have been more devastating than his cancer. At the very least, it was a significant turning point for him, me, and us.

His depression, while understandable, was challenging for me as his live-in caregiver and girlfriend. I had been warned the year before by a colleague whose mother-in-law had brain cancer, that the illness can change a person cognitively/emotionally. After the accident, he was not only depressed, but also more forgetful and disoriented. The changes were so subtle at first I thought perhaps I was imagining them. When I would suggest he try to shore up his memory by programming his phone with alarms or letting me write him reminder notes, he bristled. He also refused to go to a local brain tumor support group or speak with a psychiatrist. All of which, lead to tension between us.

It was sort of a catch 22 situation. He resented me taking control of more aspects of our lives, but was too depressed to do much to maintain his independence. Meanwhile, I resented that he wasn’t taking advantage of his dwindling time on earth and with me. He had lost a lot, but not the ability to appreciate a sunset or a good meal or the smell of the ocean.

We had a few terrible arguments during this period. The worst, when I came back from visiting my family in NYC for a few days. I had recharged my batteries but also tasted ‘normal’ life again, which made the return to our sad situation all the more upsetting. I accused him of giving up prematurely, of basically waiting to die, and warned him that this attitude would not fly with me for much longer. He had said many times that if he lost the ability to ride, he wouldn’t want to live. But if he no longer wanted to live, why was I approaching a nervous breakdown trying to help him?

Finally, in mid-March he started to turn around. He agreed to speak with a few potential psychiatrists and he went to (and enjoyed) a brain tumor support group. We hung out with some friends and had some good times. Whether he was doing so because he genuinely thought it would help or to please me, I’m not sure. We never got a chance to see if any of these things were helping because he had seizures in late March.

Before he passed, I tearfully apologized to him for being such a terrible caregiver. He responded, “You weren’t a terrible caregiver. You did a great job. And please don’t cry. It hurts me to see you cry.”

After he passed, the guilt I had already started feeling intensified. I had done much right, but had also done some wrong. The moments when I said things in anger were the hardest to live with. And it was difficult to discuss with anyone except my therapist because people didn’t want to hear about it.

Since then, I have learned that there is such a thing as caregiver’s guilt, as well as survivor’s guilt. I will write more about them in another post. These days, I try and reflect with compassion. I try to understand his point of view, and in my communication with him since his death (through my writing), have tried to articulate mine. It’s strange and bittersweet, but sometimes I feel as if we understand each other better now than when were in the thick of it. It’s amazing what one sees after the fog of cancer-related stress has lifted.

Darcy Thiel – Part Deux

Last month, I had the pleasure of introducing mental health counselor and author Darcy Thiel on Riding Bitch (http://ridingbitchblog.com/2013/01/04/introducing-darcy-thiel-industry-friday-9/). We continue our ongoing conversation today on the subject of caregiving, and invite you to join in with any comments and/or questions. My half of the conversation will be on Darcy’s blog next Thursday.

Q:  Darcy, had you had any previous experience with caregiving before your husband Tim was diagnosed with Stage IV gallbladder cancer in 2010?

A:  Yes.  My mother was sick in 2007.  She was finally diagnosed with colon cancer and died three weeks later.  I consider that my biggest learning curve (not that you ever stop learning).  I spoke up when I was concerned or things didn’t seem right.  But the doctors and nurses always seemed to have an explanation for things.  I tried to be very rational and told myself that I may have a good head on my shoulders, but I was no doctor.  I had to trust the medical professionals and what they were saying.  This was one situation where I followed my head before my heart.

Unfortunately, I found out later that things were not as they should have been.  There were many doctors and nurses at the hospital that were just plain wrong.  They did not understand my mom’s condition.  She was not taken care of the way she should have been.  We even caught one doctor in an outright lie.  As a result, my mother suffered tremendously at the end of her life.  It was unnecessary.  This experience changed everything for me – how I view the medical world, how I act as an advocate for myself and others, and even how I counsel clients.

Now I say without a doubt to trust your instincts.  If things don’t seem right, they probably aren’t.  If you aren’t satisfied with the answers you hear, ask again.  Ask many people.  Ask until you get what you need.  Your life may literally depend upon it.  I’m not suggesting you be cynical and assume everyone is incompetent.  But it means to be careful and pay close attention.

Q: Are there any other specific things that you would advise caregivers?

A:  Yes!  In general, I would do these things anyway, but they are an absolute must if you are dealing with any kind of chronic medical problem.  Get a notebook.  Take it with you to every single appointment.  Write everything down.  Most importantly, let the medical professionals see you do it.  Take their name and their title.  Write dates and times.  Even when they just check your vitals or something.  I have found that those professionals who are conscientious about their work and do it well will not be threatened by this.  In fact, often they encourage you to do so.  We are all human and medical professionals are too.  We all work better and more carefully when we know we are being held accountable.  My book is full of these kinds of situations.

In my second book, I will probably talk about a situation with my father when I accompanied him to the hospital.  They wanted to repeat a blood test because they didn’t believe someone had already done it.  I was assertive enough that I wouldn’t let them touch my dad until they double checked their records.  I was right and they apologized.  Not life threatening, but a good lesson in paying attention to the details.

Q: What was your experience of caregiving for your husband like? 

A:  Sometimes it was downright frightening.  I had to respect his wishes as it was his life.  But when do you intervene?  When do you take over?  In the book I talk about a time when Tim was in great pain but didn’t want me to call the doctor.  I was not confident and most of the time I didn’t even have a knowledge base to start with.  So you had to arm yourself with facts, then decipher through your individual circumstances.  Scary.  It’s too much.  But I did it because I loved him. It was truly, truly a sacred honor.  I’ve never done anything more important!

Thank you for sharing with us, Darcy.

If you would like to learn more about Darcy, Tim and their family’s journey, please check out her book “Bitter and Sweet, A Family’s Journey with Cancer,” which is being released by Baby Coop Publishing. Reviews are available at http://www.babycooppublishing.com. A trailer for the book can also be viewed there or on YouTube http://youtu.be/Xapeagk_5tE.

Other ways to reach Darcy:

her website http://www.marriageandfamilycounseling.net

her blog http://www.helpforhealing.wordpress.com

on Twitter http://www.twitter.com/HelpforHealing1

Thank you for supporting Darcy and sharing your thoughts.

Happy creating!