"Own Your Care" Is Now Available! - Introduction Excerpt
Own Your Care: A Family Guide to Navigating Complex Illness, Declining Health, or Unexpected Prognosis is a Number 1 New Release and Bestseller on Amazon!
Below is an excerpt from the introduction:
HOW THIS BOOK CAN HELP YOU
You or your loved one may be facing a new serious diagnosis, a worsening long-term illness, an advancing disease, or declining health. Your health may now be impacting almost all other areas of your life—work, career, relationships with friends, social life, hobbies, spiritual health, your role in your family—and you may be overwhelmed by data and test results, uncertain about which treatment path to accept (or not accept). You may be questioning whether the current medical path you are on is really the path you want to continue. Or you may be struggling with a scarcity of information (“He won’t tell me honestly how I’m doing”) or recommendations (“She says I’m fine and to keep doing what I’m doing, but I don’t feel fine”). You may be encountering seemingly mixed messages from different members of your healthcare team and feel at a loss for how to prioritize next steps. You may be wondering, What should I be asking?
This book can help.
Own Your Care is your guide to how to advocate for getting the best healthcare for you when living with complex illness or declining health. After all, what may be the best medical care for one person may not be for another, which you will quickly see in chapter 1. In this book, you will find answers to over sixty of the most common questions about living with a lifealtering medical diagnosis or life-impacting health conditions. You will learn
• how to define what “quality of life” means to you;
• tips for having difficult conversations with doctors, family members, and children;
• tips for asking about prognosis;
• suggestions for altering your work schedule;
• suggestions for securing financial assistance;
• how to effectively express wishes on advance directive legal forms;
• how to contend with physical symptoms;
• what caregiving really entails;
• tips to cope with caregiver burden;
• whether to consider alternative living situations;
• when to consider hospice support;
• how to cope with grief and loss.
You are navigating complex terrain, but the path does not have to be perilous. With the information and suggestions in this book, you can move forward with confidence and peace of mind.
Since health issues affect not just one person, but the entire family—whomever the person considers family—and close friends, this book is also for family members, friends, and caregivers whose lives are impacted day-to-day by their loved one’s symptoms, mood, medical appointments, and health trajectory.
You will see the P icon next to questions intended for patients, and the F icon for questions aimed at family and friends. Many questions are intended for both. The book follows a general path in the journey of living with serious or complex health issues. It begins with suggestions on how one might define quality of life that will guide future medical decision-making; then touches upon the domains of life that may be affected by worsening disease such as the emotional, social, spiritual, work-related, and financial domains; and finally, closes with answers to questions that may come up toward the end of this journey, such as when one might consider hospice support and how one could leave a legacy. Though the book can be read in order front to back, each section was written to stand on its own in case you find some topics more relevant to your current situation. Also included is an appendix of pertinent questions to consider asking your healthcare providers at different junctures of your journey, as well as a glossary of terms and abbreviations you will encounter in the book.
Finally, I want to point out the numerous examples of patient dialogues incorporated throughout this book. For over a decade, every time a patient, family member, or healthcare colleague’s words, phrasing, tone, or actions surprised, upset, or moved me in some way, I jotted them down to reexperience the moment. And then I kept these notes out of gratitude because these words helped me see each patient as a unique person far beyond “that patient with the end-stage disease” or “that patient with the unfortunate prognosis.” I included amended versions of their words in this book to show that though you may feel lonely or isolated living a life impacted by illness, you are not alone. I hope the example dialogues give you a sense of connection to other fellow human beings, as they did for me.
For those of you who have already ordered or read the book, thank you for the support! I hope the book provides you valuable help and perspective.