Preface

As a newspaper reporter, I imagined the only stories I’d ever write would be short—perhaps three hundred words or less. Yet, one snowy day in March, as I sat staring out the window of an Orthopedic Surgery ward, the beginning of an entire book spilled onto the notepad in my lap. Speaking Up For Mom was born.

Mom sat propped up on pillows, peering sideways at me from her hospital bed. “What are you writing?” she asked suspiciously.

I didn’t dare say, “About us.” So I shrugged, “Oh, nothing…Just notes to myself.”

A week later, Mom was gone.

I put away my notes and forgot about them for nearly three years—until one day when I was walking with a friend and told her the story of Speaking Up For Mom. My friend was mesmerized. “You need to write this book,” she said. But I wasn’t so sure. Could my story really help someone else? Don’t we all go through the same things? Well, perhaps that was the point.

I had no guidance or prior experience about how to advocate for Mom during her health care journey. Maybe you are in the same situation with a loved one, or have that ahead of you. Or maybe you have already travelled down that road, and along with some precious memories, you have some lingering guilt. I know I did.

I originally wrote this book as a guide for my husband and our adult children, should they ever need to advocate for me. Admittedly, being responsible for another’s health can be a scary thing. It is also an incredible privilege when someone trusts you enough to place their life in your hands. Yet, with so many options for medical treatment available today, it’s imperative to know what your loved one wants and to recognize that they have the power to choose. We must give them a voice.

In Speaking Up For Mom, you can follow along as I go through a steep learning curve trying to protect my loved one in our medical care system today. I recount Mom’s perilous medical odyssey in eleven critical stages, which comprise the chapters of “Mom’s Story”. After these developments, we visit with Internal Medicine Physician Dr. Edward Hanzelik, who draws upon his decades of wholistic care and patient advocacy to share his compassionate and candid perspective. Unfortunately, I did not know Dr. Hanzelik when Mom was alive. Luckily, he is here for you.

“Mom’s Story” is followed by “Nine Basic Lessons”, a reference guide for all the things I wish I had known—things that could have positively influenced and helped me make better decisions regarding Mom’s care. Not all of the lessons will be applicable to you now but they may help you prepare for the future. The links and footnotes in each lesson are a great place to delve further into each topic. And remember, this book is meant to be a jumping off point and just the beginning of your research!

Finally, there are “Helpful Resources,” a compilation of sample documents and sources to have at your finger tips—resources that I wish I’d had.

There are two ways that Speaking Up For Mom can guide you to a better patient outcome. One, it can help you become informed about what’s possible for your loved one and what your role is in protecting their wishes. And two, it can help clarify and help you convey your health care wishes to your health care proxy—so that when you need that person, it will be as simple as possible for them.

But remember, just as a parent cannot guarantee one’s child a perfect childhood, we cannot guarantee our loved one a perfect outcome to their medical crisis or a perfect end to their days. It’s just the way it is. However, being as prepared as we can be for the situation certainly helps.

One final thought. People who work in medical care, whether they be doctors, nurses, technicians or assistants of various kinds, are often there because they want to make a difference. They want to relieve human suffering, and their efforts are often heroic. Without them, many of us would not be here. But I now understand that every patient needs someone in their corner. The question is, are we willing to be that person? Can we overcome our fear of the white coats? Are we willing to speak up?

With kind regards,
Llee