Memorial donations now hold sacred meaning for me. Blocks of time have new descriptive adjectives. A daily accomplishment is toasting a bagel, while grandiosity rests in washed and folded laundry.
The outside world stays there unless it involves picking up a narcotic-based medicine not on the approved-for-delivery list. You get to know the Dempsey Center in South Portland, where the experts in holistic cancer care stress you are no longer a caregiver, but a “carepartner.”
I became a carepartner in late October, but the term never seemed accurate. Having been on a decades-long mission to make self-care a priority, partnering with various institutions on behalf of someone else felt like a nearly impossible task. Northern Light Mercy Hospital Cancer Care and their visiting hospice team are lovely, professional people, but it wasn’t until my sister went to the Gosnell Memorial Hospice House in Scarborough that the scale of responsibility shifted to lighten my weight.
Obviously, this is the moment I am expected to talk about what an honor it was to bring my sister into my tiny condo and care for her until her rapidly approaching last days. And really, it was. Above all else, spending time with her in such an intimate way was an opportunity we hadn’t had (or known we wanted) since early childhood.
But intimate we were. I would be unable to write and share any of this if the anger, frustration, helplessness, and fear that comes with carepartnering weren’t slowly fading.
My sister was an intensely private person who, despite all of life’s bum hands, was able to be happy living her own way. Her path was the third fork in the road, making it hard to relate to her perspectives and perceptions.
But she was kind, generous when she had nothing, and deeply loved her family. She loved me in particular, rarely being able to see past my 4-year-old self with curly hair and budding daddy issues. It made the early days of last November especially difficult since she fought her advanced cancer diagnosis with a conspiracy theory level of mistrust, leaving me to do the already precarious adulting and decision-making for both of us.
Days started to blur around Thanksgiving and into December. I was exhausted, unable to write, and dropped balls juggling my own life. My sister’s physical capabilities and mental comprehension faltered more each day; we mastered something one day and it was no longer effective the next.
I started going to counseling at the Dempsey Center and signed up for complimentary massages for carepartners. But I only made it to two Zoom counseling sessions and one in-person massage because getting from the kitchen table to the sofa took almost an hour.
My sister was not interested in anything they offered except Tai Chi, but that faded when her body refused to cooperate with her brain.
Petrified acceptance seeped in. We watched all of “The Great” on Hulu, all of “The Marvelous Mrs. Maisel,” and I read to her often from a poetry book that had been our mom’s.
My dog, Mellie, intuitively knew what was going on before we did and she velcroed herself to my sister. Mellie was the consistently gentle cheerleader: She tolerated new people in her house, didn’t bark at scary medical equipment, and was gracious when four firefighters and a paramedic from Ladder 4 came at 2 a.m. for a lift assist after a fall.
During February and mid-March, I found myself apologizing to my sister over and over for losing my patience. I cried and screamed at my brothers who were out of state. I was pressured to ask for help getting her to a nursing home, but I just couldn’t. My parents took care of their parents, and before she died, I promised my mother, The Betty, that I would take care of my sister.
Toward the end of March, I could no longer provide what my sister needed to be comfortable. She refused her pain medicine and an angel from hospice made phone calls to admit her to the Gosnell House. My sister resisted, knowing as I did, what the move meant. I assured her she would not have to suffer what she saw as indignities (intravenous meds, for example) and that Mellie and I could be there too.
I gave them permission to medicate her (but no IV) and after a few days, she lost consciousness. My brothers, daughter, and dad made it here before she died on April 3, one week after she went to Gosnell.
It was the very best of the worst and I am grateful.
I recently found a notecard in a guest room drawer, placed there before my sister moved to a hospital bed downstairs, while I wasn’t writing.
“Nat,” it said. “Please, please start writing. Say what you need to paint a colorful picture of all this, but not too much about me.”
I still have a great deal of art to make around my sister – around her life, her death, and her unassuming legacy. Thankfully, I have my writing.
Natalie Ladd is an award-winning columnist, freelance writer, and Portland restaurant veteran. She loves Boston sports, California cabernets, and has never sampled a cheese she didn’t like. Reach her at [email protected].