Surviving My Caregiving Anxiety

The new normal

But when that adrenaline ran out, when the surgeries were over, I was left with vast uncertainty. Our new life, they told me, would look very different. The key was to minimize my expectations, whatever that meant.

I was spent. I was the lifeguard who had gotten the drowning victim to shore, and now it was my time to collapse. And collapse I did. I experienced acute despair, went on an anti-depressant and met with a grief counselor. I would cry at odd moments, usually in the car, or in nature — safe places where my children couldn’t see me. So much of being a caregiver in those days was protecting my children from the fact that there were no answers around their father’s long-term recovery.

But now, almost 19 years later, caregiving had grown from protecting the children into protecting myself. Last year, I opened a bottle of wine alone, shed a few tears, and quietly honored the wedding anniversary that marked the fact we’d been married longer post-trauma than the years before. I raised a glass to myself, promising to never lose my wonder, to continually seek joy and laugh as often as I could.

My husband had healed beyond anyone’s expectations, returned to work, been an excellent father and a loving, grateful husband. We’d experienced a life no one had predicted after the gravity of his injury. We’d beaten the odds, remained together, despite the sky-high divorce rate following a traumatic brain injury. We’d laughed and lived in the moment, tried not to waste time imagining what would have been, the alternate universe of our life together without the “before and after” of trauma.

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Physical anxiety

And yet here I was, alone in the wake of a marital firefight, feeling depleted, isolated and in the throes of some total, physical fear response. Sleep, the one thing I’d learned could recalibrate me, eluded me. Why was my body responding this way now? There had been numerous other skirmishes, moments of exasperation and futility like any marriage. But emotions, especially in caregiving, aren’t always rational. And the terrible knowledge churning inside of me, was that the person who supported and championed me, knew how to soothe me, was also the source of my anxiety.

The caregiving club

Get a group of caregivers in a room together and it’s like a secret society, a safe space with its own shorthand for those in the “club.” And don’t you dare use the word “inspiration” around any of us. I mean that. We’ll converse about things no one likes to acknowledge because there are no real answers: the emotional toll, the exhaustion, the polite patina, the resentment, the occasional urge to run out the door and save yourself. As I lay, chin trembling, adrenal system flooded like an animal in a trap, I understood, with sudden clarity, that my own acts of devotion, were shortening my life in some unknowable way, extracting a physical price in years.

For the most part, I face adversity, sorrow and uncertainty by “getting stuff done. But I have learned this: You cannot be solely responsible for another person’s emotional well-being. It’s impossible. You can put flowers on the table, cook a healthy meal, marvel together at a sunset, laugh at a rom-com, but at the end of the day, happiness is an inside job.

The future terrifies me. How will we age together? Which one of our brains will give out first, with Alzheimer’s and dementia on branches of both of our family trees? Sometimes I wonder, “Can I do this again? Do I have it in me?”  And yet, every time we make up after a fight, I remember why I love him, and revisit the things that work between us, even on the hard days. When we ended up back home together the next morning, we talked about what happened and vowed not to handle it that way again. 

Finding your people

Recently, I did something I couldn’t have foreseen in the early stages of my caregiving journey; I organized a support group of like-minded caregivers. We all need friends with whom we can abandon the “I’m fine, thank you,” responses. My own strategies and mantras were fraying, losing their power to relax the self-imposed need for constant vigilance. My “go-to” calming imagery — a happy place on a lake — was fading like a photo in the sun. With age came less energy, more physical reminders of my own mortality, an elevated cholesterol that needed tending, a shoulder surgery here, a torn meniscus there. My own mental tank needs filling at more frequent intervals.

I’m not sharing this personal moment because I have any answers. In fact, I’m sharing because we need them. We need to talk more about the hard things, the commonalities and fears. We need to open the conversation more often with “Today stinks…” or “I’m sad…” and then be ready to see what might come back. Even if it isn’t pretty or perfect. At this stage in my life, I want to be around people who are brave and real, who love a spicy joke (even if they wouldn’t tell one) and are unconcerned about perfect appearances or Instagram filters.

Accessing resources

Many of the columns I write for AARP offer helpful tips or resources. Because this is my own story, I can only offer small things that have worked for me. They aren’t original and they certainly aren’t magic. But the first step involves just taking off the mask and being real with someone else.