A new caregiver is like a driver in a foreign land. The vehicle is a stick shift, the terrain is mountainous with many switchbacks, and there are no maps, timetables, or rest stops. A catastrophic event or diagnosis catapults a caregiver into a territory that is poorly lit and offers up no familiar landmarks. The roads in this new world are all one-way, careening toward a new normal. There is no going back.
Fear, confusion, self-doubt, and almost unendurable worry swirl to make the first days of sudden-onset caregiving a blur. At this stage, it’s difficult to retain information or to make important decisions. A future that was once so sure and so carefully planned is suddenly random, chaotic, and completely unknowable.
WHEN IT MELDS WITH NEED, THE POWER OF LOVE CANNOT BE OVERESTIMATED IN HEALING THE HEARTS AND MINDS OF FAMILIES.
There are a few basic truths that reveal themselves in almost every story of the early days of giving care to someone with a serious illness, disability, or life-threatening effects of aging. The first is that love remains intact. Looking into the eyes of a loved one and touching her hand is the beginning of resolve to harness love as the fuel for building a new kind of future together. When it melds with need, the power of love cannot be overestimated in healing the hearts and minds of families. It is the single most important ingredient in locating the path forward and the strength to walk it.
The second truth is that in caregiving, time slows down. As matters of a before-caregiving life cease to be important, a sensation of powerlessness will likely invade the caregiver psyche. Survivors of automobile accidents often describe the sensation of time slowing down when recounting their experience of a traumatic and life-changing event. This is a deeply human response to extreme fear and anxiety, and it’s a helpful one for caregiver self-preservation.
A new caregiver will have many, many questions. But there are a few that are vital to ask in the early days: “Can I do this alone?” “Who will help me?” At first, identifying one friend or key ally who will promise to make personal support a priority will be a big first step toward positive action and healing in the caregiving family. Building a coordinated team of support will come later, but at first, securing a commitment of abiding friendship from a single support person is enough.
As days, weeks, and years pass, the caregiver is slowly transformed. If the need for care grows incrementally, it may seem that at first, each helping task is perfectly doable. But taken together and over time, the burden of care may become overwhelming. This is especially true in the case of degenerative disease combined with the caregiver’s own aging and life or work responsibilities.
TO SURVIVE LONG-TERM CARING, A REARRANGEMENT OF PRIORITIES IS REQUIRED, A COMING TO GRIPS, A RECONCILIATION OF PERSONAL GOALS, A “SETTLING IN” TO CARE.
To survive long-term caring, a rearrangement of priorities is required, a coming to grips, a reconciliation of personal goals, a “settling in” to care. But sometimes there are natural barriers to making peace with caregiving. Caregivers may engage in a battle of priorities, culminating in making enemies of both work and home. They may crave multiple social connections and the consoling “noise” of an independent and bustling working life. Does being “settled in” to a caring role represent liberation or captivity? Being in the right place, doing the right thing is natural for young parents caring for their children. But what of an older parent caring for an adult child with disabilities? What about the kind of parental care that feels like a role reversal in the case of Alzheimer’s? At the start of a care journey, a caregiver might strive to finish caring tasks quickly in order to return to “normal” life.
But with the passing of weeks and months spent in an intimate relationship with a loved one who is ill or infirm, time shifts, and the disorientation of the caregiver role is injected with routine that temporarily silences the chaos. Yet, amid the routine, ongoing tensions emerge that mark the caregiver role as infused with contradictory needs and desires.
On the one hand, a caregiver may stop wishing to be somewhere else. Being alone with a loved one can morph into a natural way to be. Then, a caregiver notices that the slowness and quiet of caring is in itself a presence, not an absence. Settling for the reduced ambitions of caring for a loved one opens a door to a life rich with humanity and meaning, but also a life that is difficult to explain to others—a life others say they admire but stop short of walking toward out of fear and misunderstanding.
Of course not everyone falls into a taxing but intimate rhythm of caring. If a loved one is suffering, the call to care can be a call to battle against pain and exhaustion. But in the absence of anguish, caring can become a quiet truce in a land that is foreign to most other people.
Here, there is the possibility of intimacy, of reflecting on hopes, dreams, and mortality. Here, there is the chance to be grateful for small joys and tender mercies. And with this enhanced connection, there is an unprecedented proximity to suffering, fear, grief, and doubt that few others know (or want to know). The true wisdom of caregiving lies in realizing that the meaning of care cannot be delayed until “it” is over because care changes us and our loved ones throughout the process.
Caregivers can’t help but realize that their control of what happens is limited, but what they can affect is how they make sense of their experiences and how they use these stories to connect to others along the way. And even if these insights and wisdom are not present because home is too chaotic to experience stillness, caregivers will learn the meaning of forbearance—the essential ingredient in being able to proclaim with certainty, “I’m glad I stayed and did the right thing.”
Our goal isn’t to tell caregivers what they should feel or think about their care experiences. Rather than present clichés or top tips, we wrote this book to provide readers with tools for self-understanding and glimpses of possibility that do not deny the breadth, scope, and uniqueness of anyone’s particular caregiver realities. Caregivers are experts about their own particular situations. What follows is an exploration of the common and recurring ways in which anyone who cares for another is transformed over time by the role they have taken.
Caregivers will no doubt insert themselves into the transformation stories in the chapters of our book, The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver, but allied health professionals may find new understanding of their caregiving clients there, too. Conversations between caring families, friends, and health professionals may be enriched and informed by the truths revealed in this book so that they may share stories and experiences that have existed in the shadows far too long.
The book is an exploration of what happens to us when we stay, when we care, when we turn toward—not away—from our loved ones, and how deep care for another transforms us and our relationships.
About the book’s authors
Donna Thomson is a caregiver, author and activist. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. Donna Thomson also wrote “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” and blogs at The Caregivers’ Living Room.
Dr. Zachary White (@Zmwhite) is an Assistant Professor of Communication. He received his Ph.D. in communication from Purdue University. His academic research and teaching focus on how people manage meaning and communicate their experiences amidst high levels of ambiguity. He has published and presented academic research addressing health communication as encountered by medical providers, informal caregivers, family members, and organizational employees. He teaches university courses at the graduate and undergraduate level addressing topics including provider-patient communication, health and illness narratives, digital health literacy, interpersonal communication and relationship development on and offline, online social support and disclosure, the management of health-related disclosures in the workplace, and sense making amidst life transitions.
The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, New York, 2019) is available at all major online booksellers.
Their respective Facebook page urls are: https://www.facebook.com/donnathomsonauthor/ and https://www.facebook.com/unpreparedcaregiver
Their website urls are: www.donnathomson.com and https://theunpreparedcaregiver.com/