Today, our periodic correspondent Joanne Milo (who blogs at The Savvy Diabetic) is back with a review of a cool new book that aims to prepare new T1D caregivers for the monumental task(s) at hand...
I met Samantha Markovitz at an annual JDRF chapter meeting in Southern California. I actually sat right next to her and we smiled. Little did I know that she was that evening’s speaker. At that time, the 24-year-old had only had T1D for two years -- and I’d been living with it for over 50 years. I was surprised that she had the confidence to take the microphone in front of crowd of so many long-time T1s, as well as having started a counseling business for T1s. So I asked whether she felt intimidated or possibly under-experienced.
Her answer speaks volumes about her wisdom and confidence: “Everyone’s life experience with diabetes is different and everyone’s initial diagnosis had different impact.” Yup. We can all attest to being “experts” in that we are living it every day.
Fast forward two years later… Samantha Markovitz has just published her first book, "Type 1 Diabetes Caregiver Confidence," a very complete primer to help caregivers (grandparents, babysitters, neighbors, or indeed anyone who might have to step in to help your T1 child if you are not there) understand the basics of diabetes, treatments, emergencies, etc. All this in just 128 very readable pages!
She says she was motivated to write her book after reading a blog post in a T1D Facebook group, where a mom remarked that she and her husband had not spent even an evening away from their son since he was diagnosed five years prior. "It broke my heart to think of the barriers that so many families experience in attempting to provide a normal childhood, stemming from a lack of confidence in the abilities and understanding of a caregiver who may not be familiar with type 1 diabetes or how their child’s management is unique."
Samantha remarks, “It wasn’t until I began to take charge of my own knowledge and care by taking advice from close family and friends with T1D, researching independently, and plugging into my local diabetes community that I received the information that I needed.” Lucky for her she's a fast learner! But many people struggle in this situation.
"So many caregivers in a child’s life, like teachers, school nurses, grandparents, babysitters, camp counselors, and neighbors, want to be able to confidently care for the child, but simply don’t know how. At the heart of this book is the desire to help people who generally live unaffected by type 1 diabetes to understand it. By focusing on children, who are often unable to advocate for their needs, I came up with a book of 'basics' that would be important for caregivers to know about type 1 diabetes management, and some of the points of life with T1D that are important for context but not often discussed.”
Filling a Caregiver Need
Samantha says that while reaching out and connecting with others in the community, she found that a resource guide for caregivers did not yet exist.
"It seemed that this was an area sorely lacking for families, and I wanted to make this information more accessible to people who may not have a need to understand diabetes from the perspective of a part-time or 'sometimes' caregiver. What makes this book is different than anything else available is that it was created to be an easily referenced handbook, written in a concise format with accessible language.”
The book is divided into three sections, addressing:
- Basic questions about diabetes
- Day-to-day care and concerns
- Caregiver-specific information
In the back, there's a template for fill-in information for parents to leave with the caregiver, questions to guide conversations between caregiver and family, and a glossary with common diabetes terminology. So it's almost like a workbook for a would-be caregiver.
My favorite piece of wisdom comes in Chapter 14: Diabetes Improv. The basic rule in improvisational performance is called “Yes, and…” As Samantha explains, for any scene to continue successfully, the actor (or here, the T1D) must accept whatever situation has been laid out and then add on or react to that situation based on the information given. In diabetes, there's an endless list of possible outcomes or actions for the caregiver. But despite how challenging the outcome looks, the role of a caregiver is to look at it and accept it at face value. The “and” portion is the T1D knowledge and skill to make a choice about what next steps to take. Read more on page 105!
Despite being diagnosed with T1D only about about 5 years ago, as a young adult, Samantha has a lot of valuable experience under her belt -- some of it pretty scary.
Her own initial diagnosis landed her in the ER with DKA (diabetic ketoacidosis) after feeling ill for months and being told she was simply stressed or a hypochondriac. While in the hospital, the endo on call told her that she would lose her driver’s license and would never be able to wear high heels again because her feet would eventually be amputated (!) A nurse told her that if she ate better and exercised, it would “go away.” After discharge, she was referred for type 2 training. After several more disheartening experiences with educators giving her type 2 information, she found a CDE who actually started teaching her about type 1.
Her quest for knowledge and for helping others started shortly after she returned to work, post-diagnosis. Samantha commented, “While I learned about my new life as someone with a chronic illness, I continually received confusing medical advice which led me to want to become a resource for others. I had to learn very quickly how to survive, but it was not enough. I didn’t want to just survive, I needed to learn to truly live and thrive with diabetes. As I continued on my personal journey, I realized I had already learned so much and wished that I had encountered someone who could have coached me through that most challenging season of my life... and then I realized I wanted to become that person so that others would not experience the same issues that I had.”
She became a Mayo Clinic Certified Wellness Coach, and added other diabetes-specific training, including an associate diabetes educator program through the American Associated of Diabetes Educators (AADE). She took every opportunity to read new information, attend events, and learn from the experiences of others as she met more people in the diabetes community.
She is founder of GraceMark Wellness & Lifestyle Coaching, and while building her practice and writing her blog, GraceMark Musings, she puts in some hours in a teen retail clothing store, where she gets to educate and encourage young ladies to participate in local diabetes events.
Samantha lives with her family in Orange County, CA, and her adorable dog, Scout, who brings her much comfort. Her younger brother, who is still in college (at University of Arizona, Sam’s alma mater) entered the TrialNet study recently and tested negative for antibodies. Her uncle was diagnosed with type 1 diabetes several years ago, as an adult.
A Childhood T1D Story
I can personally attest to how important a guide like this is for caregivers!
I think back on my own childhood and recall that when I was about 12, a year after my T1 diagnosis, my mom had to go somewhere so she dropped me off at my grandparents’ home. My grandmother was a very bright lady, having started medical school in 1921 and later studied the law and passed the bar in 1939. She listened closely as my mother gave her instructions:
- Joanne knows what she can eat
- Joanne needs a 10am snack, like cheese and crackers
- Joanne can test her own urine (using Clinitest)
At 10 a.m., my grandmother rolled out a huge tray of food: cheeses, a variety of crackers and bread, a selection of cold cuts, pickles, cookies, chocolates, and fruit. Truly, a feast for 10 hungry kings!! I smiled and wisely selected what I knew I needed. Then I explained it to my grandmother. And we LAUGHED! She was so nervous about taking care of me that all she focused on was making sure I had "enough." We kept the tray to show my mom, who was horrified. We had to calm her down!
So this is a very real issue! Even the smartest and best-intentioned caregiver can feel unprepared and frightened of being in charge of a child with diabetes.
A Perfect Guidebook
In my opinion, Samantha’s book is perfectly outlined, from start to finish. I felt like it was in a prep course in college, being taught the basics and then the details. Important information is highlighted in bold. And hopefully, the next edition will include call-outs and some personal stories and insights.
Overall, I found it easy to read, and wise to keep on hand and share with anyone who needs a quick and accurate education on taking care of a T1D of ANY AGE!
Samantha really knocked it outta the ballpark, IMHO. You can find "Type 1 Diabetes Caregiver Confidence" on Amazon: $15.83 for paperback, or $9.99 for the Kindle edition.
But before you go out and buy it yourself... here's your chance to win a free copy!
A DMBooks Giveaway
Interested in winning one of two free copies of Caregiver Confidence?
Just leave a comment below, and be sure to include the codeword "DMBooks" somewhere in your comment so we know you're in it to win it.
Since our comment system requires log-in, you may also email us your entry directly at firstname.lastname@example.org, using the subject line "T1D Caregiver."
You have until Friday, June 9, 2017, at 9pm PST to enter.
Please be sure to keep tabs on your Facebook messages or emails, as that's our only way to contact winners.
Good luck to all!