Introduction to Bounce Back
For the first time in many months, I felt energized—upbeat, even. On my way to the hospital, I’d made a special stop at Jill’s favorite grocery store. It was, after all, the day we’d been waiting for. A good breakfast was in order. Holding her breakfast box in my hand, I entered the hospital lobby anticipating Jill’s typical happy welcome.
We’d need to pack her belongings and maybe take a walk down the hall before checking out. The hotel was only a block away, and while her pace would be slow, I couldn’t wait to walk there together after several nights going it alone. Exiting the elevator on Jill’s floor, I felt relieved, to be sure, but my good mood was about more than that. For the first time in a very long time, there was ease in my heart. After an extended, often confusing period of uncertainty, we would have blue skies ahead. I might even be able to throttle down on my prominent role as the family caregiver. It was, at least, a possibility now.
As I walked down the hall toward Jill’s room, I felt a very different vibe from the nurses. Their typically warm and light-hearted greetings had been replaced by a seriousness that was written all over their faces. Instinctively, I tensed as one of them approached me. Standing and listening to news I could not have anticipated, my body turned rigid, almost stone-like. I asked a few brief questions and nodded, hardly able to speak as I turned toward the kitchen.
Walking directly to the garbage can, I tossed Jill’s special breakfast into the trash, removed my cell phone from my jacket pocket and phoned the hotel to extend my room reservation.There would be no breakfast. There would be no walk back to the hotel with Jill at my side. There would be no “hospital discharged” celebration, and once again, inner calm would be a luxury I couldn’t afford.
“At times being a family caregiver can feel like a storm that never quits.”
In a matter of seconds, my demeanor had turned mechanical, robot-like. I could tend to practicalities, even integrate complex medical details with utmost efficiency, yet I was almost entirely numb to my most basic emotions. If you’re a family caregiver, you may know this feeling.
You may also know the incredible uncertainty of living moment to moment, never knowing what medical, insurance or other catastrophe is due to hit next. At times being a family caregiver can feel like a storm that never quits.I know I’m not the only one who’s lost countless hours of sleep, suffered through endless, frustrating calls with providers and insurers, navigated my days pinned to my phone, terrified of missing a doctor’s or surgeon’s critical call. That doesn’t even count the hours and energy invested in actual caregiving—managing meds, coordinating medical and rehab appointments, tending to your loved one’s every physical, mental and emotional need. So why do I do it? Why do any of us do it?
We’re family caregivers because we can’t not be. Sure, our situation may reflect financial and logistical realities, but it’s more than that. We care for our loved ones because we can’t imagine leaving them in strangers’ hands or leaving them to live alone.
We show up out of love for them and gratitude for all they’ve done for us in our times of need. We care for them, quite simply, because our heart and soul say that we must. As difficult as it is for our loved ones living with their health challenges, being a family caregiver often isn’t that much easier.
With so little control over our time and energy, many of us end up feeling isolated. Friends and family who once were part of our normal lives become frustrated because we’re never available and when we are, we often cancel on them at the last minute. They’re fair complaints, sure, but the reality is, once we become family caregivers, our priorities shift, simply because they have to.
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
As lonely as we may feel at times, none of us are actually alone. In the United States today, there are 53 million family caregivers—individuals who regularly provide care for their loved ones without pay. That means on any given day nearly 25% of the adult U.S. population is dealing with family caregiving issues. They’re big numbers, yet they do little to change our everyday experience—and in the end it’s our everyday experience that most affects how we think and feel about ourselves and our lives.
My current role as a family caregiver to my wife, Jill, began nineteen years ago. In truth, however, my caregiving mindset first began when I was just a kid with a baseball, a bunch of friends, and who-knows-how-many big dreams. My story, and those of many other family caregivers, will unfold in these pages, but know this—I’m not here to drone on about what it’s like to be a family caregiver. Hell, I don’t need to tell you that. If you’re reading this book, it’s probably because caregiving is already part of your life.You know what it gives to you and what it can take from you, and how all of it can change in a matter of minutes.
Giving back to family caregivers—a group that spends so much of their lives giving to those they care for—is a mission that I connected with soon after retiring from an extended and successful business career. That mission is also what prompted me to purchase Caring Today, then a print magazine for family caregivers, about caregiving. Along with a small staff, for nearly 10 years were searched, wrote and distributed millions of magazines through our 28,000 physician office network, reaching nearly 2 million family caregivers with each magazine issue. To reach as many family caregivers as possible in 2015 I took our message online, where it continues today. What I’ve noticed over my years of writing for and working with family caregivers is the incredible toll that our labor of love can take on us. As keenly aware as we are of our loved one’s needs, we often overlook our own physical, mental and emotional aches and pains. That self-neglect isn’t just what we do. It’s often what we feel we should do, what we must do. Like most family caregivers, I focus on Jill’s needs long before it occurs to me to pay attention to my own. The problem is, for family caregivers, our self-neglect has potentially serious consequences. As meaningful and important as caregiving can feel, the additional load it thrusts upon us also negatively impacts our health.
46% of caregivers experience a decrease in health and well-being due to caregiving.
41% experience depression, mood swings and resentment.
53% also suffer from higher stress levels.
All of these symptoms can, over time, contribute to significant declines in our physical, mental and emotional well-being. They may also weaken our immune system’s ability to fend off disease and illness, and make us more prone to chronic pain, migraines, sleep disorders, fibromyalgia, and more.This, of course, is above and beyond the social isolation and incredible stress, worry and anxiety that often hangover our heads, casting shadows over our moods, our dreams, our interactions with others as well as ourselves.
The life balance issues that are inherent to family caregiving often negatively impact our professional and financial well-being, as well. According to research, 70% of caregivers have to take extra time off from work, which puts their employment at risk. 9% of caregivers, or nearly four million people, lose their job because of their caregiving responsibilities. That’s a lot of stress to add to the already considerable stress on being a caregiver in the first place. As critical as our caregiving duties are, to continue to play this important role, we first have to find a better way to navigate our own lives and personal needs. We have to do this for the loved ones, yes, but we also have to do this for ourselves.It’s a realization that struck me many times over many years. Finally, this inner-knowing pushed me to look more deeply into the family caregiver experience and figure out how we can regain the one thing we’ve often lost—some measure of control over our lives.Based on my own journey and discussions with family caregiver over the last 20 years I discovered what I now refer to as The 7 Pillars:
Communication
Community
Contribution
Gratitude
Personal Strengths
Self-Care
Self-Compassion
The beauty of the 7 Pillars is they’re all right in front of you, waiting to be rediscovered, dusted off and then used to help you take back your sense of self and yes, some parts of your life. In the pages that follow, I lay out how each of these pillars helps caregivers like you to reclaim at least some parts of their lives, parts that matter and can bring us great joy. I also share specific tools, which I call disruptors, that will help you to use these pillars to enhance and uplift your life-experience, if only in small ways that, over time, add up to noticeable positive change. Throughout this book, I’ve intentionally written shorter chapters that are easy to digest, and at times, I hope, entertaining, too. You can read this book as it’s laid out, or select whichever section or chapter feels most relevant to you at a given moment. Essentially, this book is yours to read, return to, flip through, and be reminded by. Think of it like a trusted companion, a good and reliable friend. Keep it close by so you can get that helpful little tip, or that momentary laugh, when you need it most.I won’t pretend that this book is some kind of miracle worker or magic potion, but I will say what I know to be true. Bounce Back can and will help you to do just that—bounce back—sooner and more fully—from the overwhelming stress and anxiety we know and live with everyday, as family caregivers.
Imagine feeling good, like you have more control again. Imagine having some part of your life back. None of it is perfect, but all of it is possible. One day at a time, we absolutely can, and will, bounce back.
With compassion and love,
