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The Underlying Issue of Caregiving: Fear

Learn therapeutic techniques to help pause spiraling thoughts and regain a sense of control

spinner image Caregiver holds hands with an elderly female patient.
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Peter* was my go-to guy when it came to all things gardening in the summer.

He is one of my favorite relatives in an extended network of family that vacations at the same lake in upstate New York each summer, and we have a shared language of composting and bulb planting, soil supplements and dahlia tubers that would make most folks keel over with boredom. This summer, I noticed him moving more slowly. Where he’d always hopped spryly around the beach, there was a sudden heaviness to his gait. 

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Shortly after that, his wife Anne Marie* asked if we could talk. Out tumbled her story, full of worry and anxiety around her husband. A bout with COVID had left him with long haul symptoms that had morphed into incredible joint pain.

He’d gone from taking daily walks to moaning out loud every time he rose from a chair.  A recent diagnosis had come back as psoriatic arthritis, something I vaguely recalled from nightly news television ads. 

“He’s in so much pain,” she said, eyes brimming with tears. “I don’t know what to do. They’re trying to find the right combination of medications, but it could take months. Some days, I’m helping him out of bed in the morning.” 

Life changes in an instant

Pulling into my driveway a week later, my phone lit up with a call from Anne Marie. They had returned to the Midwest from the lake, and I had heard his symptoms had worsened.

“Can I unload on you for a moment?” she asked. I assumed she wanted to talk to me because of my husband’s recent hamstring injury. He’d grumped around on crutches for six weeks, the blues crushing his normally buoyant spirit in the run-up to our eldest daughter’s wedding. I had confided in my relative once, in a moment of unguarded honestly, how hard it was to live with someone in pain, depressed and angry, incapable of some daily life skills. 

“Peter has turned into an 80-year-old man before my eyes,” she said. “And I’m afraid for the future. How did you cope with this part?” They were empty nesters, close to retirement age, and they had already been dreaming about this next period of their lives: travel, time with grandkids and a sense of freedom and independence.

Unexpectedly, their horizons had gone from wide-open skies to a narrow alley. But more than worrying about his physical pain, she was struggling to tamp down her own daily fears about their future. She wanted to be strong and present for her husband, but also to lift herself out of a gulch of sadness that she worried could engulf them both. 

“I didn’t imagine myself as his caregiver in our 60s,” she said tearfully. “I knew it would be a role one of us might have to take on in another decade or beyond, but this all feels so frightening. It’s the not knowing that’s the hardest part.”

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Lack of control

Her words rocketed me back to an earlier time in my life when fear and anxiety lodged in my throat like a stone. When I thought about the trajectory of my own life and marriage, I’d imagined that my husband and I would roll through the various decades with challenges and triumphs, joys and heartbreaks coming at us like small asteroid showers.  

I’d even imagined being a widow before being a caregiver. My husband was a war correspondent, and so I’d been braced that one day I might receive a phone call with devastating news.

Silly as it sounds, I hadn’t contemplated injury; the fact that trauma would leave its mark on me, make me constantly vigilant and often focused on things out of my control. Before my husband’s traumatic brain injury caused by a roadside bomb in Iraq, I was keenly aware of the statistics and the fact that toward the end of our lives, one of us might end up caring for the other. 

And yes, I always assumed that would be me.  I just hadn’t factored on that happening in my 40s. And here was someone close to me, now in her 60s, wrestling with the same disbelief and fear I had felt.  

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Caregivers are known for their stoicism. They get points for being able to “buck it up and suck it up” in our culture. At least that’s what it can feel like. Caregiving is sometimes described as “a duty” and “what you do for a loved one.” We are told to “put the oxygen mask on first” or “take care of yourself,” two versions of the same phrase that make most caregivers I know feel like hurling a blunt object at the person dispensing this advice. 

Whether you’re in a short-term situation with an illness or injury, or nursing someone through a life-threatening or end-of-life situation, caregivers are called upon to be cheerleaders. But we’re also expected to be the quarterback, tackling our loved one’s fears, sorrow or worries and helping to keep them calm and positive.

But the one topic I don’t hear much about, the one thing we caregivers need to be more honest about, is the subject of fear. For me, so much of it came down to the lack of control one has with any illness or outcome.

I look back and remember the fear that I was losing myself, of watching the bags under my eyes grow into darker circles. Hair loss, anxiety, acid reflux, lack of sleep are just a few of the side effects I experienced.

Caregiving aged me, inside and out. And now I was watching my beloved relative go through something similar. A happy husband, always generous with a laugh and quick with a joke, had become a somber, groaning, skeletal version of himself. His wife, an even-keeled and calming influence, became a frightened person, worry etched in her forehead. “Will we ever get to experience those golden years everyone talks about?” she asked me. 

Thinking about what had worked for me, I tried to share my best advice. Sleep when you can, eat smart food, give in to your body, pass on the alcohol, stay hydrated and shrink your world down. That meant not getting too far ahead of myself when I tried to imagine the future. 

I did small things back in those hard days. I focused on objects or actions that brought me beauty and calm; flowers in a vase, photos of people I loved, reaching out to friends with whom I could unburden without judgment. But fear — fear of the future, fear of losing my husband, of losing myself — was my default position any time I found myself alone with my thoughts.

Coping with uncertainty

Augustina Rueda, a licensed clinical social worker and therapist in New York City, works with clients experiencing fear and anxiety. She explains that these spiraling thoughts take caregivers out of the present and into the uncertainty of the future, which is why we need to separate our feelings from what she calls “the chattering mind.”

“Our bodies message us,” says Rueda, “and it’s important to tune in to that messaging. As our mind lights up with thoughts about the future, it drives us away from the present moment, and disconnects us from ourselves and others.”

Those feelings and emotions that also make us feel physically powerless end up in areas like shoulders, jaw and even digestion. “In those moments, it’s helpful to be curious about the body and tune in to where fear is landing,” Rueda explains. “The work is to remind ourselves to be with the ‘what is’ and not think about the ‘what if,’ ” she says.   

Grounding exercises for caregivers

Rueda offers a simple process, grounded in our five senses, that can help caregivers step back from the brink of fear when it tries to ambush them. It begins with scanning the physical area where you are, ideally outside in nature:

  • Locate five things you can SEE
  • Find four things you can TOUCH
  • Listen for three things you can HEAR
  • Find two things you can SMELL
  • Locate one thing you can TASTE

This simple practice brings the mind back to the “what is” reality of the world. It also allows caregivers to relax enough to breathe, and deep breathing — getting more oxygen — is one of the best ways to calm the nervous systems and deal with what is in front of us.

What I learned was how important it is to have a Plan B. When caregivers can get their arms around the thing that scares them and break it down a bit, it can also wrestle back a sense of some control over the future. Fear may always be a part of caregiving, but having the tools in your kit to fight back is just one more way caregivers can do their best to care for themselves. 

*Actual names withheld to protect privacy

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