Nicole Bell is an award-winning author of What Lurks in the Woods, a raw and gripping memoir about her family’s journey with Alzheimer’s and tick-borne illness.
“Wow — I’m amazed by your vulnerability.”
This statement dominates the feedback on my memoir about my husband’s battle with early-onset Alzheimer’s disease. At first, it struck me as odd. I merely told it as it was, my reality for over five years. Caregiving, particularly for someone with dementia, was brutal. But as I received this comment, again and again, I started to feel guilty. Why? It didn’t take much soul searching to realize that when it came to vulnerability, I sucked at it.
I remember juggling the madness. I was an executive in a high-paced, rapidly growing medical device start-up. I was raising two over-scheduled children under the age of 10. I was running a demanding household all on my own. And I was the full-time caregiver of a dementia patient rapidly descending into massive bouts of confusion, anxiety, and hallucinations.
But when friends asked me how I was doing, my standard response was, “I’m fine” or “I’m OK.”
Fine? OK? I’ve read my journal entries from those times, and I was a long way from OK. Breakdowns in the back of my closet were common. I lost my temper with the kids. The word “failure” dominated my inner thoughts. Every day I battled for one more ounce of energy, and every day I came up short.
But when friends asked me how I was
doing, my standard response was,
“I’m fine” or “I’m OK.”
But to the outside world, I was strong. My kids needed stability and comfort. My husband needed someone to make him feel safe and secure. My team at work needed a leader and problem solver. So, day after day, I pushed my emotions down deep. I convinced myself I was “fine” and moved on. There was always another thing to do, another task burning. So I stuffed my needs until I nearly imploded. I became a raw wound, so infected that healing seemed impossible.
Fortunately — for at least me and my children — my husband’s descent was rapid. Two and a half years after his diagnosis, he declined to the point where I could no longer care for him at home. His transition to a residential care facility gave me the time and space to process the trauma of his illness and our loss. I journaled, I wrote, I reconnected. The shattered pieces of me were reforged, but I still didn’t feel whole.
Another two and a half years passed. In 2021, I emerged from the trenches and embraced vulnerability and shared our story by releasing my memoir, What Lurks in the Woods. The love and support that followed were lifelines. My friends, family, and even strangers rallied behind us. Countless fellow sufferers reached out with words of kindness and empathy. Community and belonging replaced loneliness and failure. Cracks healed one by one, and the new me felt resolved and strong.
Huh — vulnerability leads to healing? Maybe there was something to this. I became a Brené Brown fan and let her words resonate and steep. I embraced my emotions and worked through them. I pushed myself through the discomfort and made peace with our journey.
Caregivers are a casualty — a new
patient left in the wake of another.
But I still felt uneasy when people praised my vulnerability. As a new student in the craft, I forced myself to face that discomfort and work through it with my therapist. She helped me realize the true lesson I needed to learn: It wasn’t enough to be vulnerable after the mess as a means to heal. The true lesson was to be vulnerable during the mess to blunt the trauma and its impact.
Like countless others, life threw me into a caregiving role without warning. I was unprepared and scared. To make matters worse, my husband’s dementia made him adversarial and verbally abusive. I was hesitant to use the word trauma, knowing the full depths that categorize the word. But caregiving is traumatic. Watching a loved one suffer brings stress and pain that no one should endure. Left unchecked, that stress compounds, unearthing a harsh reality.
Caregivers are a casualty — a new patient left in the wake of another.
“Make the time and space to be vulnerable. Not later, not on the other side, but now.”
Share the pain and the confusion in a safe space. Process the breadth of emotions that come with caregiving as they occur. Acknowledge that caregiving is hard and that support and community are essential for survival. Be attentive to your own needs and care for yourself.
I heard this advice from others but failed to embrace it. In hindsight, I realize this was my biggest failure, not the hundreds of things I routinely ruminated on. I now understand that I shouldn’t have to fall apart before I can heal. And I can’t take care of anyone else when I’m broken.
“Make the time and space to be vulnerable.
Not later, not on the other side, but now.”
I learned these lessons the hard way, yet I still remind myself daily to model them in my life. When I get frustrated or anxious, I unpack those feelings and share them with a friend or the person who spurred those emotions. I refuse to let things fester, no matter how vulnerable I feel in the conversation. Because I know that I must deal with the mess of life—and now is better than after compounded interest has accrued.
Caregivers are a casualty—a new patient left in the wake of another. Unless we choose not to be.