Amanda from Florida
Caregiving took away the life I knew, but in return, gave back more than I could have imagined and allowed me to rebuild a life I am proud and overjoyed to live.
There’s a saying that life-changing moments almost always happen in “the ordinary instant.” My ordinary instant was 7:08 on a Friday morning when my mom, Carolyne (Cookie to me), called me from the hospital. She’d had an MRI for headaches and it showed a brain tumor. Cookie was a busy single lady who held three jobs and had just returned from a European cruise; brain surgery was not on her agenda for Friday or any day. Yet, within hours, as friends rushed to her side (“Are these all your children?” the neurosurgeon asked when confronted with a hospital room full of people. “Yes,” we all replied, even though most were just affectionately “adopted kids” to the deeply-maternal Cookie), brain surgery became the agenda. What started as an ordinary workday became shocking and unforgettable. “Thank you for being the most important person in my life,” I cried, as she was placed on a gurney to be taken to the operating floor. “Babe, I love you. I’m scared too, but I’ll be back in a few hours,” she said. “When you come tomorrow, bring my makeup and you can drop the bag of clothes I left in my foyer at the women’s shelter on the way.” Her resolute bravery was not out of character, but still took my breath away.
By that night, as she lay unconscious in the critical care unit of the hospital, I was told that her cancer was malignant, metastatic, and likely to take her life in short order. I watched Cookie sleep from the critical care unit hallway (a vivid image, not just because of the incredible amount of machines and medical equipment surrounding her small frame, but because Cookie was never much of a sleeper). A quiet calm and resolution of my own took hold as I counted beeps and blips on those machines that ensured me that Cookie was still here, still alive for the day. I knew I would devote myself to Cookie for the time she had left and to cherish every second we shared. At that moment, I became a caregiver.
Cookie lived one year and three days from that unforgettable Friday. For the duration, she was radiantly beautiful and didn’t complain once (except to use a few well-timed curse words to describe how she felt about dying so young or say how much she missed martinis). Unbelievably so, because her cancer and aggressive treatment robbed her of the ability to walk, talk, eat, or perform any activities of daily living. Before long, she needed 24-hour assistance. Cookie wanted to be home as much as possible, but saw me burning out and knew her needs were not manageable even with professional caregivers and some friends pitching in. So, the year held stints in skilled nursing facilities, rehabs, several hospitals, and hospice care.
I felt like the conductor of a runaway train trying to work with her many doctors, be the nurse-on-duty at home, coordinate her public and private benefits, manage her medications and therapies, and explore options for her medical care. We put a hospital bed in her living room. I “slept” (lay awake listening to make sure she was breathing) on her pink floral couch (in my mind, still “the company couch” that I had never dreamed of putting my feet on). Most of those nights were consumed with researching ways to help make the road easier on her, on us. Would a clinical trial give a hope for a cure? Would medical marijuana (then-illegal and risky to possess because I was a licensed attorney) lessen her pain? Did other countries treat this cancer differently, and if they did, would Cookie live through a plane trip to get it? The rest of my nights were spent updating generally well-meaning friends and relatives. At high risk for infection and voice-less, Cookie asked to not have visitors and couldn’t talk on the phone. People could not understand the severity of her condition because they could not see it. They would offer “helpful” advice and comments (for example: “Have Cookie drink asparagus water! It shrinks tumors!” “My friend’s aunt’s brother’s roommate had brain tumors and he’s doing fine!” “They have lasers to fix cancer now! Make sure to ask the doctor about the lasers!”). Rarely, I noticed, did anyone ask how I was doing or what help I needed. If only there were magic lasers to fix caregiving stress.
“I’m so sorry you have to be my voice,” Cookie would tell me. Despite the stress and heartbreak, I truly didn’t mind. But what I wished for—frequently—was for someone to be my voice. From that wish came a dream. “When this is over, whatever that means,” I thought, “I’d like to become an advocate for caregivers. I’d like to become the type of attorney I could use right now.” It felt like a calling and the ever-supportive Cookie gave me a big thumb’s up and a whispered “go for it!” when I told her my dream.
Cookie hadn’t planned to die. She had medical directives (incredibly helpful to have on brain surgery day), and a will she made with an online form before going to Europe. She didn’t want to bug me, her lawyer-daughter to do those things. But because these things weren’t done, it was a scramble to be an effective caregiver. I yelled at more than one customer service representative when trying to pay Cookie’s bills (“Put her on the phone,” they’d say. “What about ‘she doesn’t have a voice’ do you not understand?” I’d growl). Thankfully, Cookie still had mental lucidity and we were able to get documents like a durable power of attorney in place so I could help her. But life would have been a heckuva lot easier if they had been done in the first place. Part of my life’s work because of that experience is to convince others to plan to care and to be cared for. We can’t predict what will happen, but we owe it to ourselves and the ones we love to take the reins on our own lives.
For my part, I hadn’t planned to be a caregiver. Not many 30-year-olds do. Like so many caregivers, the experience financially destroyed my family. My law firm fired me when my family medical leave ran out, reducing my family’s income by more than half. I felt powerless to fight for my job and just accepted the termination. We paid out of pocket for Cookie’s nursing home care, to the tune of $7,000/month. Her medical bills were extraordinary. I had no idea what rights and protections existed to help lessen these crippling burdens. It took years to learn how differently things could have gone. I have the privilege of a law degree and will eventually re-bound from the financial devastation. It is unacceptable to know that so many won’t. Caregiving can easily drive and keep a family below the poverty-level and a large part of my advocacy is working toward policy changes that will prevent or ameliorate this.
Social and personally, I was also unprepared for the burdens of caregiving. My husband, Ryan, and I were newlyweds. I didn’t see him much—at all—that year. I implored Ryan to keep working so we could at least keep one income. If I could come home to visit him, I’d try to sleep, crashing into bed, and crying in his arms. Every noise in the night caused me to shoot out of bed to check on Cookie, so even sleep at home was fruitless. Friends, generally, could not relate to what we were experiencing. Social invitations dried up, not that I would have taken them anyway. Caregiving took away any capacity for small talk or enduring common complaints. It became increasingly difficult to relate to people who weren’t caregivers themselves. The people I felt could empathize and truly “see” me were other caregivers on cancer forums. Conversations with strangers on the internet were a lifeline. At the same time, I mourned the more carefree days of my twenties, my pre-caregiver, pre-consumed-with-cancer life.
When I think of those days, I don’t think of them as being as miserable as they may sound. They were beautiful. There was unexplainable love in spending that time with and caring for my mom. Despite everything, Cookie and I had meaningful conversations and always found a way to laugh, even during dire moments (if you can joke about a C. Diff infection, you can joke about anything). When she died, I felt that there was nothing unspoken or unshared between us.
Truly, from that caregiver, consumed-with-cancer life, life is better than I could have planned. My faith grew stronger. I felt pride in who I was becoming (or maybe who I always was, without a chance to show it before). Ryan and I forged a strong foundation for the rest of our marriage in that year; our love increased tenfold despite the minimal time we shared in person. Little things didn’t bother me anymore, and still don’t. I will never take my health or life for granted and started consciously becoming a healthier person. When our daughter was born a few years later, I found no stress and had no laments about raising a newborn (changing diapers and sleepless nights? Not a problem!). Because of caregiving, I can relish every precious moment of mothering a little girl I know Cookie would adore and dote on and can appreciate all of parenthood’s joys and challenges whole-heartedly. And through caregiving, the purpose for my life revealed itself: I am here to help other caregivers, as an advocate and ally, and to make sure they are seen. It would be neat if the purpose of my life was: I am here to win the lottery, but you get what you get.
Cookie passed away on another unforgettable summer day. In the week leading up to her passing, I had been able to sit with her, hold her hand, and not be a caregiver. In those final days, I was just Cookie’s daughter. And, after the year of devotion, heartbreak, and non-stop caregiving, it was an honor that her last whispered words (aside from “I love you”) were “Thank you, honey.”
Since then, my husband Ryan and I have experienced a series of losses and caregiving experiences for more friends and family than I could write about here. It has not been an easy decade for us. Because of Cookie and what we went through so early in our marriage and because of my calling to serve other caregivers, I think we are managing it all the best we possibly could. For caregiving, for her, I am grateful beyond words.