THE CENTER FOR DYING & LIVING

I was 22 when my mom took me aside and told me she had been diagnosed with lung cancer. I was devastated. I am an only child and my mother had been my anchor, mentor and guiding light my whole life, the thought of not having her around was difficult to comprehend.

 

I was largely left out of the planning for treatments and procedures. My parents felt that it would keep me from living my life as a young adult, and so I continued as I always had, not questioning this choice. My mother always made decisions without wavering on her choices, she knew what she wanted cancer was no different – she was the decider in our family and that role continued to belong to her. I moved to find a new job, always keeping in touch via phone, email and occasional visits, but never part of decision making for treatment plans.

 

My mother underwent surgeries, chemo and drug trials for the first part of her treatment. Losing her hair and lamenting the ugliness of the whole process, but continuing to travel and live her life as she had prior to the diagnosis as much as was possible. She responded favorably to a drug trial, remission came, and with it a sense of relief; maybe this was over and we could return to normal.

 

Three years later, while I was in grad school in Italy, she called to tell me that the cancer was back, it had metastasized, a scary word she told me meant it had spread to her brain. It was a short conversation and I think we both hung up in tears. We were 6,053 miles apart.

 

When I returned home, I made a point to stay with my parents for a month before going to work. Fortunately for me, I was just finishing with school and hadn’t yet started my career. We watched The Soprano’s DVDs, went to the farmer’s market, went on walks; she was doing well and seemed like herself. I moved to a large city, found an apartment and a job. When I was 27, my mom and I even went to Paris, she walked the whole time, looking healthy, never complaining. Her treatments continued, and then came the news from her oncologist that her cancer wasn’t responding this time around. In other words, the cancer was growing again. Radiation was the prescription and my mother took it without question. My interactions with her after Paris were mostly over the phone; we’d talk about everything except cancer, just like we’d always done. I’d ask my dad, the sole caregiver, how she was doing and he’d always say she was fine, maybe a little different than last week, but “fine, really.”  Apparently, they both were.
 

Then came her first fall. It scared the hell out of my dad, he had custom slip proof rugs put into all the hallways, but it kept happening. I went home for Thanksgiving and found my mother to be a shell of herself. My father had vastly underrepresented the situation, she was frail, couldn’t get out of bed on her own, was periodically delirious, and needed to be lifted out of bed to get on and off the toilet – a task I had no idea how to do safely and ended up almost hurting both of us. The last day I was home my dad asked me about hospice. I didn’t know what to say since I really didn’t know what “hospice” actually entailed, but I knew he needed help, so I said yes.  The nurses came within a few hours, confirmed what we knew in our guts to be true: my mother was in desperate need of outside care, and we signed on that afternoon.

 

My mother died in her bedroom five days later with me, my dad and her sister at her side. The hospice social worker had called me 2 days after I left the house, told me my mother was actively dying and that I should return to their house immediately. The hospice team was the reason I was even present for her death, to be holding her hand at the time of her last breath, we could not have gotten to her peaceful passing without them.