“Mrs. Fuller, we have all the reports back from your CAT scan and biopsies. What we are dealing with is Stage Four Non-Hodgkin’s lymphoma.”
It’s an early-morning doctor’s visit in February 2001, and these are not the words I want to hear travel from an oncologist’s mouth to my mom’s ears.
It is good I was recording the conversation, because the ensuing shock faded out key parts of my memory. I felt foolish when I went back later and listened to some of the questions I asked:
“How many stages are there?” I asked.
“Four,” he replied.
“Do they start with ‘four’ and count down, or start with ‘one’ and count up?”
“There are four stages. ‘Four’ is the last stage. This means that the cancer has metastasized to several locations. The cancer is in the liver, spleen, several lymph nodes, and … well, I know this is a lot to take in, but we have treatment options.”
Mom: “So, this is the end?”
Doctor: “Mrs. Fuller, we can extend your life and give you some good days. This cancer responds well to some particular chemotherapy, but at this stage we are not able to prevent a recurrence. I believe you will qualify for a research project that shows some hope of long-term remission.”
Mom, “That’s it. I don’t want any treatment. It’s the Lord’s will, and I’m ready.”
In that moment, I took on a role I would have for 13 years: I was now on a “care team.”
A care team is a support group sharing the journey with people fighting to live well while battling sickness, disability, or death. Any of these can occur without notice or as part of the “normal” process of aging. This news began a steady and continuous series of health challenges in our family. The challenges included my wife, Tammy, who had advanced cancer. My dad had Alzheimer’s, advanced lung cancer and other less ominous conditions. My mother-in-law had the long progression of MRSA. My father-in-law faced off with congestive heart failure, diabetes, high blood pressure and other issues that go along with aging.
Back in the exam room, I asked my mom to listen to all the options before we made decisions. She agreed. The rest of the appointment took 53 minutes. She understood that the clinical trial she qualified for would be a very difficult treatment protocol that included heavy chemotherapy and a bone marrow transplant. She agreed to “give a try” for reasons that were consistent with who my mom was.
She said, “If you can learn things that will help others beat this thing, then I want to help you learn what you need to learn. Hiram (that’s my dad), I’m sorry you have to go through this, but if you are OK with it, then I’ll do what we need to do.”
My dad nodded at me and said, “George, we can do this.”
I said, “Of course we can. Fullers don’t give up without a fight.”
It was a two-year fight. She died on February 13, 2003; this extra time allowed Mom to be present for the wedding of my oldest son, my youngest son’s high school graduation and a host of other joy-filled moments. This is what started my journey of intentional living, growing, and facing head-on the aging process and ultimate reality that we as human beings will one day die. Perhaps, it’s more accurate to say it is how my journey “expanded.” We are always on that journey and, sometimes, we notice.
I didn’t know how to navigate these challenges well. I hated not knowing how to help those I love, including myself, have a good life.
The experiences of those 13 years included a mandate that resulted in this book. I see now that much of what drove me to learn and plan was for my own protection, and a way for me to maintain some amount of control. Unfortunately, I didn’t have the foresight to see the full impact my decisions would eventually have on my entire family. For example, the college debt we’re still paying off today because of money that was moved from the future of my boys to the care of those in crisis. I can’t help but think that our parents would have wanted us to save more for the young people they loved so much. We all took time off of work without a discussion of who could afford it and how our financial resources would be replenished. Now I realize that we could have minimized the impact on our financial plans for both the short and long term if we had simply paused and talked openly as a family. In retrospect, I see so many places we could have saved money, honored boundaries, made memories, and involved a wider circle of people for strength and support.
As we went through those years of caregiving, we were doing the best we could to live our own lives — adding spouses, babies, friends, and moving in and out of jobs. Fortunately, I had the gift of time with a counselor and a spiritual director who helped me navigate the personal struggles that emerged during this time. I spent hours in what I call my “chair,” struggling to face my weaknesses, embrace my strengths, and ultimately make the decision of who I wanted to be and how I wanted to live. I dove into research about the various health conditions that had impacted the ones I love, the process of aging, and the complex world of products, professionals, programs, and services that often felt like an avalanche chasing me down a mountain. Many days, my biggest challenge was following my dad’s encouragement to “keep your pecker up.” (That was his crude way of describing the ability to maintain a sense of joy in the small space between laughter and tears that we call “real life.”) I know some of you will face everything that I went through without the supportive family, “enough” money, and good friends I had. This book is for all of us, but especially you.
So, let’s dive into you.
When was the last time you thought about “growing” into the rest of your life, more aware and more intentionally?
Who will you “be” to the babies being born into your life now and in the future? What role will you play in their individual lives as they begin their journeys? If you’re their parent, have you thought about the legacy you want to leave them? Have you considered what you want them to know about living and dying and when you want them to know it? Have you thought about what impact your aging process will have on them and how to protect them from undue emotional, physical, financial, and even spiritual stress? If you’re their relative or family friend, will you be an active participant in their lives and develop a personal relationship with them, despite a significant geographical distance, or will you be more of an acquaintance who keeps up with them from afar?
Which of your friends do you want to share the “whole of life” with? Meaning, who will you jump into life’s mud with, no matter what sacrifices it will require on your part? Do they know it? Do you know which friends will be there with and for you when you’re in the mud?
Is your career facilitating your ability to maintain the life and relationships you want? Are you working in a job that gives you life or sucks the life out of you?
Will the life you are living now provide for you and those you love while creating a legacy worthy of your life?
Is finishing life well something you consciously plan for, or is contemplating “the end” an overwhelming mass of details and dread that you tend to block out?
If you don’t have answers and plans for these questions, I understand. I didn’t, either. And I’m still continuously working on them. This book will not give you the answers that are particular to the life you share with your people, but I believe you’ll find what you need to guide the Essential Conversations you need to have in your own soul and with the people you love most. You will also have a process that will empower you to make life plans so you can enrich your relationships and secure your future. As we begin, we will look at the challenges and then we will address them in ways that fit real life as well as our own hopes, potential, and limitations.
Praise for Life Compass Living
“This book is a great gift for all who want to build healthy, mutually supportive relationships so they can flourish at all life stages—especially as they age.”
—Dr. Amy D’Aprix, Life Transition Expert, Board of Directors, International Federation on Aging, Author of From Surviving to Thriving: Transforming Your Caregiving Journey
“Life Compass Living meets a need expressed by many of my patients, friends and family members. The book offers a guide to help us navigate life decisions while enriching our most important relationships.”
—Paula Flynn, MD, Canada
“The Life Compass protocol has completely changed my life. It’s truly that powerful.”
—April Koontz, MSW, Writer, Family Caregiver and Behavioral Health Advocate
About the Author
For George Fuller, Life Compass Living was born out of his 40 years as a minister, community leader focused on the homeless, mental illness, older adults and addiction as well as his 13-year journey as a caregiver (with his family) for both his parents and his in-laws through the end of life. He discovered how confusing and emotionally draining it was to be a caregiver. The Life Compass Plan Protocol was developed using aging science, brain science, motivational interviewing, and family systems theory to help navigate the complexities of aging and address the insecurities of young adults, while securing the resources needed to share life with those we love. George holds a Master of Divinity and Doctor of Ministry with a specialty in small group process. He is also a Certified Senior Advisor (CSA) and a Family and Financial mediator.