If the phone rings in my house after 9:30 p.m., chances are you'll have to peel me off the ceiling. My blood pressure rises, my adrenaline spikes, and my brain flips to “What if?” scenarios before I let out my breath. Such is the nature of trauma — my trauma, at least — the mental and physical whiplash that occurred when I was instantly thrust into the caregiving world with one phone call.
For those who have gone, or will go, from one “business-as-usual” day into the chaos of crisis, there is no preparation, no time to think about a playbook for what to do and how to act. The days, weeks and months afterward feel scary and unsafe, turbulent and completely unfamiliar. One friend of mine described the experience of becoming a sudden caregiver as waking up and finding you are on the surface of the moon, a wholly foreign place.
Life journey without a road map
In 2014, Karen Warner Schueler, then age 60, picked up the phone and learned from her husband Joel, 67, that he had stage 4 lung cancer. They'd both enjoyed thriving consultant careers prior to his diagnosis, traveling globally and working with some of the world's most well-known companies. In the aftermath of the news, she imagined there would be some kind of road map to instruct her on what to do next and how to organize their lives. Yet the kind of advice and tactical plan that she needed did not seem to exist.
"I had a fantasy that the hospital would put an app in my hand, I'd type in “stage 4 lung cancer,” and it would tell me exactly what to do,” Schueler says. “Nothing was further from the truth. Don't expect the medical world to have the exact answers for you or your care recipient. Doctors would routinely ask us to let them know what we had decided, which only compounded my sense of panic.”
While the sudden caregiver has no preparation, no warning signs or slow changing of circumstance, the long-term caregiver certainly experiences situations of crisis. Schueler, like so many others, was jumping into the deep end with her husband, making it up as she went along, and she needed to try to get ahead of the situation.
"I had no caregiving muscle when I got my husband's phone call,” she says. “And suddenly, life as I knew it was over. Moreover, Joel was the person with whom I always made decisions, and the fact that this had happened to him was completely disorienting.”
Choosing your ‘squad'
One of the biggest challenges of being thrust into caregiving is that often the caregiver and the care recipient have different views of how much or what kind of care is needed. Those views don't always mesh with reality. Especially in the early days, the sudden caregiver needs to think and act like a quarterback, ready to make the calls and plays and be the final decision-maker.
Immediately following the crisis of my husband Bob's injury in 2006, there were many well-meaning people swirling in and out of my house with varied opinions about what should and shouldn't happen in all aspects of our life. I mentally embraced what I referred to as “my inner general,” calling upon my own strength to make the right decisions for the family, even if it meant overriding others’ ideas of what might work. I decided who would be part of my inner circle, the people I would turn to if I needed a gut check or something done without fanfare or guilt. Schueler refers to this process as “choosing your squad.”
"I made a list of what I wasn't good at,” Schueler remembers. “Things like doing the bookkeeping and arguing with the insurance company. Then I lined up people who wanted to help, and they simply took over. Be selfish,” she adds. “Don't let anyone into your squad if they're not able to deliver."
There are 53 million caregivers in this country, each with his or her own circumstance and situation. But Schueler points out that the basic journey of sudden caregiving is the same, whether it's a child suddenly caring for a parent, a spouse caring for a spouse or a caregiving situation with a child or sibling. Financial and psychological changes often accompany this transformation. For many families that had enjoyed a dual income, one paycheck may suddenly disappear when the focus shifts to caregiving. This leaves little time to prepare financial plans and can drastically disrupt budgets and savings.
"When you're on a journey at sea, a checklist or a map is a helpful thing,” Schueler says. “I asked myself if the road map and the resources were different for the sudden caregiver and the long-term caregiver — and if so, how? I realized that in both cases you need to be able to build your own resilience for the road ahead.
Sharing knowledge with others
Schueler has a degree in positive psychology, and her career had been focused on helping people to intentionally build a practice of resilience. Her journey as a sudden caregiver, and the knowledge and advice she had acquired, gave her the idea to help others meet the demands of caregiving with the mindset of well-being. After Joel passed away 18 months following his diagnosis, she immediately began work on her book, The Sudden Caregiver: A Roadmap for Resilient Caregiving.
Approximately 10,000 people in the United States turn 65 years old every day, notes Schueler. For many, that age is a general turning point in the average health of the human body. “The fact that the number of caregivers keeps increasing, along with the idea that we're all going to make this up as we go along, was crazy to me,” Schueler says.
Everything she was reading about caregiving kept talking about how hard it was, and yet she had a theory, based on her own experience, that two opposing things could both be true when it came to caregiving. It was not an either/or. “What I realized through my own journey was that caregiving is difficult, physically demanding, draining and hard — and yet it is also a source of well-being.” When she thought back to the moments when she was caring for her husband, she realized that during much of that time, she felt closer to him.
Schueler began to talk to caregivers about their experiences and ask questions such as: Are your relationships stronger? Do you have more engagement? What are you proud of concerning your caregiving role? She began to evoke positive emotions from the people she was interviewing, and that led her to think about the ways in which we can all choose to reframe a narrative or try to visualize good times and moments ahead.
She developed the acronym “CARE” to describe the different cycles of caregiving. It stands for “Crisis, As Normal as Possible, Resolution and Evolution. “The very simple concept of trying to keep things “as normal as possible” particularly struck me as an important nugget. Providing caregiving for someone to a certain end (or over a long period of time) is a journey punctuated with crises and then periods of normalcy. Resilience is built by anticipating that things will go upside down from time to time, but by actually living in the in-between. That mindset is a huge step forward in mental wellness for both the caregiver and recipient.
Schueler's book outlines the road map essentials that form a continuous circle for caregivers as they move through all aspects of their journey. Like any muscle, this work takes intention and practice. Her pathways to caregiver well-being consist of these steps: Map your journey (set goals and make hopeful plans), assume the position (be proactive), create your care team (include only trustworthy doers), count your blessings (practice gratitude), take care of you (find ways to prioritize your own health) and build resilience (seek the silver lining).
Douglas Noordsy, M.D., director of lifestyle psychiatry at Stanford University School of Medicine, studies the importance of lifestyle changes in overall physical and mental well-being. “Caregivers often become so focused on caring for their loved one that they sacrifice their own needs and self-care, leading to burnout and depression,” he says. “It's essential for people to balance their caregiving with regular exercise, a Mediterranean-inspired diet emphasizing fruits and vegetables, stress management techniques such as mindfulness or yoga, seven to nine hours of quality sleep nightly and supportive social relationships. This may require supports to allow the individual to take time off from caregiving in order to nurture themselves and ensure their mental health and longevity.”
How to Build Caregiving Resilience
Tips gleaned from Schueler's book:
Information at your fingertips is power. While much of the world finds info on the internet, there is no substitute for having a ready piece of paper in front of you and the ability to flip through a binder organized with all the essential information on schedules, medication, important contacts and more.
Evaluate your level of social support. Identify who in your social network can help keep you sane at times by providing stimulus and laughter, even if it means they need to come to you.
Keep a gratitude journal. Research has shown that writing what you're grateful for each day can help you reframe your outlook. Choose an optimistic narrative, even on a bad day. Being able to say, “But this good thing happened today …” results in more resilience and higher well-being.
Sustain good lifestyle habits and invest in self-care. Get as much sleep as you can, eat healthy foods, limit alcohol and try to get exercise — even a 10-minute walk. Most of all, hang out with the right people. Nobody needs a Debbie Downer in the caregiving mix.
Give yourself mini breaks. Find little moments across the day and the week for a 15- to 30-minute release valve, at the minimum.
Self-determination is an important mindset. Understand that you have more insight and power than you think. Give yourself a pep talk!
Ask for help. We may feel like we are imposing, but most people truly do love to be asked to help out. And that act of giving and receiving can bring us closer to others.