Chapter 1: The Unexpected Journey of Caregiving

As the majority of caregivers are middle-aged women balancing careers with the impending loss of a parent, I was unprepared for the complexities that lay ahead.

THE WIND PHONE

I rise before dawn, around 5 AM, still dazed from sleep. My hair is a mess, and I'm not fully awake. I tiptoe through the dark to the kitchen, where the world outside is cloaked in night, except for a peculiar shrub shimmering under the streetlight. I pause to admire its glow.

I turn on the coffee maker and sink to the floor, pulling my shirt over my knees, my pink toes peeking out. I gaze at the flickering green light of the coffee maker, inhaling the rich aroma until the gurgling signals that it's ready. I pour a steaming cup and proceed quietly down the seven stairs to the landing, then six more to the basement. My bare feet softly touch the carpet as I settle into my chair, taking a sip of my Ethiopian Yirgacheffe, a small luxury that I cherish despite the exhaustion from a mere four hours of sleep.

I sit in the stillness, cradling my cup, staring out at the darkness. I ponder that sometimes, a body needs rest just as much as it needs sleep—perhaps even more. Soon, the day’s routine will begin.

“Is it time to get up? Is breakfast ready? Is that coffee I smell? Can I get changed? Can I have a warm bath? Can you shave me? Can we sit outside? Is there more coffee? When is lunch? Can you help me to the bathroom? Can we go back outside?”

One day, I joke with him, "Good payback, Dad. You ask more questions than I did as a kid." His laughter fills the house, a sound that brings me joy and makes it all worthwhile.

We visit the optometrist, where he jokes about confirming my blindness. Then we head to the grocery store, and he insists on pushing the cart. I guide it gently from the side, and he chooses his favorite old clothes, despite the disapproving looks from strangers. Their opinions are inconsequential compared to his independence.

The doctor informs us of a tumor in his stomach, set to grow larger until… I interrupt, my eyes welling. "He’s not starving to death on my watch," I insist. "I’ll feed him ten small meals a day if I must." The doctor regards me with pity, but I was right; he didn't die that way.

I assumed the role of my father's caregiver, preparing his meals, handling laundry, accompanying him to medical appointments, assisting with personal care, and offering companionship around the clock—all while managing my work-from-home clients, cleaning, and paying bills. I often cried myself to sleep from sheer exhaustion, but in hindsight, those responsibilities were the easier part of the journey.

I wake suddenly to him gripping my ankle, distressed from a nightmare. "I had a bad dream," he tells me in a shaky voice. I glance at the clock—3 AM. "It’s okay, Dad. Let’s make some hot cocoa."

We shuffle to the kitchen, and I warm the milk. "Remember when you made me hot chocolate when I had bad dreams?" I reminisce. He smiles, recalling, "You always had bad dreams."

I prepare the cocoa with sugar and cinnamon, topping it with whipped cream, and ask him about his dream. "I forget," he replies. "That’s fine," I assure him. "It’s just nice spending time with you." “Anyway, I love you,” he adds, a sweet habit that makes me smile and brings tears to my eyes as I realize how much I’ll miss it.

According to his Veteran's Affairs counselor, 66% of caregivers are middle-aged women—those in their forties and fifties, often juggling jobs alongside the needs of an ailing parent. While walking in my backyard, she observes my fatigue. "You look tired," she notes. I admit I am, having been up at one, three, and five. When tears fill my eyes, she pauses, concerned. "It's okay," I reassure her, "I’m just tired."

"You need to take care of yourself too," she advises. I know, I reply. "Can I hug you?" she asks. And so, this woman I met only two months ago embraces me while I weep on her shoulder, confessing I'm not ready to lose him. “I know, sweetheart,” she says softly. “It’s so hard.” I nod, but little do I know that the hardest part lies ahead.

Fear has become my nightly companion. I awaken each morning hoping he’s still here, fearing he may have slipped away in the night. This reality is harsh, knowing the end could come at any moment.

Chasing the ambulance, I cry, praying he holds on long enough for me to say goodbye. At the hospital, the nurse instructs me to sign a form before I can see him. Distraught and unable to see through tears, I scrawl my signature and rush down the hall.

In a state of shock, I lash out at the doctor, demanding he leave me alone. "Don't touch me," I yell, "You don’t get to comfort me." I can't bear to see him like this, a ventilator in his mouth—a haunting image I'll carry forever.

I gently place my head on his chest, whispering, "I love you," and "I’m so sorry." I call my siblings, who understand with just one word: "Dad." They come, one by one.

As his legal guardian, I sign papers, choose a casket, and plan a funeral. Dylan Thomas once wrote, "Old age should burn and rage at close of day." But my father didn’t rage; he died laughing, sharing a joke before falling. When I mentioned this during his eulogy, it brought tears to everyone’s eyes.

As I watch men in suits load my father’s casket into the hearse, my brother approaches, asking how I’m holding up. I want to say it all happened too quickly, but instead, I find myself wrapped in his arms as I cry.

Despite the many professionals involved—doctors, nurses, psychologists, end-of-life counselors—no one prepared me for the hardest part of caregiving: the aftermath.

After everything is done—buried and gone—what they don’t warn you about is how the tasks of caregiving create deep neural pathways in your brain. These pathways don’t vanish quickly; they slowly fade, causing a painful rearrangement within.

I wake at three AM, convinced I hear him calling. I leap from bed, instinctively responding to his imagined needs. It’s a relentless loss—a death by a thousand paper cuts, revisiting the heartache over and over.

That’s the hardest part: the brain's struggle to adjust to a life without caregiving. But even knowing this? I would do it all again in a heartbeat. Perhaps you should know that, too.

"You have my whole heart. You always did."

―Cormac McCarthy, The Road

Chapter 2: The Unseen Battles

The first video, "Failing as a Family Caregiver," explores the emotional struggles faced by caregivers and offers insights into managing these challenges.

The second video, "Hard Truths About Caring for Aging Parents," presents the realities of caregiving, shedding light on the difficult choices caregivers must make.